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n/a
48 Posts |
 Posted - 02/07/2010 : 09:59:33
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Hello everyone,
I have been on this board on and off. I have suffered from Interstitial Cystitis (IC) and IBS for close to three years, though my IBS is not usually debilitating. My IC, on the other hand, is hell on earth every day. I don't take meds and I have eliminated 99% of other treatments.
I don't seem to be able to make progress with the mind-body work, and I would say that my IC symptoms have not improved for the past 2 years. I have very painful bladder urgency and also frequency problems (including frequency attacks). Basically, my bladder is also always sensitive, such that I might be able to sit on a couch for 1-2 hours without using the bathroom, but as soon as I shift or get up, I immediately have to use the bathroom from the friction or I am in horrible pain.
I have done my best to continue leading a normal life. I have a successful career and decided not to let IC deter me from having a kid (I am pregnant right now). That said, it's been very difficult to have any sort of fun. I love to eat out and travel and while I have continued doing these things as much as possible, they're really exhausting when you're constantly in pain and rushing around looking for bathrooms.
My life is stressful, and I am trying to address that as best as possible. My job is high-pressure in a number of ways, though ultimately less so than pretty much any other one I could have picked in this line of work. I also had a lot of stress growing up, and I know I have suffered from the type A personality, perfectionism, etc. Unlike some people on this board, I am not someone who buries their emotions as much. I recognize that I still do it, all I am saying is that I have gotten in trouble more often for speaking my mind than for bottling things up!
I used one of the better-known TMS psychotherapists, and he was very nice but we both agreed after four sessions that there really wasn't much he could do for me any more. We identified my perfectionism and need to control things, and I try to be more aware of these things and give myself a break.
I really don't know what to do. I read the books. I tried the journaling. While I understand the road is rocky, I am sorry to say I never made any progress even taking all that into account. Sometimes my symptoms seem to follow a TMS pattern (e.g. I worry I will be in pain and then I am) and sometimes not at all. Sometimes ignoring symptoms is better, and sometimes it does nothing (which really would be true with just about any illness).
There are many theories of IC, and needless to say I initially tried all sorts of treatments too numerous to list here. Sometimes they seemed to help for a while, sometimes they did nothing (and yes, I do think at this point the placebo effect was huge).
I want to get better and I know that others with IC have gotten better with mind-body work (I also used an life coach for a while who did get better that way).
I have better days and worse ones, but my bladder never feels anything close to okay/normal. |
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pericakralj
77 Posts |
Posted - 02/07/2010 : 16:31:46
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| I just can say if its any help to you that i had almost all of your symptoms and that all of them is gone for 3 years now.I just used mind body work. |
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n/a
48 Posts |
Posted - 02/07/2010 : 18:42:07
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| What were the specific things that you did? |
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catspine
USA
239 Posts |
Posted - 02/07/2010 : 19:47:09
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Jamie
My condition is different from yours but thank you for posting your story, most of us are going through ups and downs and I was surprised by your determination not to get bothered by the condition.It's a great asset. Of course there comes a time when one doubts about oneself or simply gets tired of it and it gets tough. You 're just being tested.
I have been through such times myself and am not completely out of the woods yet still patching up here and there but it is better than it was. At least you know what your condition is and can act accordingly while to this day part of mine is not yet figured out as I don't have the money for the medical part if there is such thing which I'm not even sure of either. TMS is involved in the process that's for sure but that's not all or maybe I don't think it is.
I think that one of the reason i'm sometimes confused is because I'm okay one day or part of it and bad the next or part of it like a yo yo... an other reason is that the perspective that this will end someday and that life will go back to normal prevents me from making a definite choice to give up my crazy life style as I still benefit from it . The perspective of becoming a brick in a wall is scary after having so much latitude .
Anyway Please don't give up because I know by experience that when it get harder it's often because you're getting closer to a change .
Don't let it get to you . |
Edited by - catspine on 02/07/2010 19:50:50 |
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n/a
48 Posts |
Posted - 02/07/2010 : 20:20:11
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Thanks, catspine. It's just, have I now been "tested" for two years? I mean, at what point does it just sound like it's not working? Yes, I "have IC" and "have IBS", but these are both just diagnoses of exclusion (i.e. "we can't find anything else wrong with your bladder/digestive system"). So ultimately, I really have no idea what's going on. I know I have a lot of TMS-type issues such as:
- Anxiety both from putting myself under pressure and to some extent from being shy even though people can't tell. I can tell that sometimes when I am under a lot of pressure, including in social situations, I literally stop breathing for several seconds. Various forms of stress are really having a huge effect on me, and I am having a hard time preventing that.
- Anger about my past, though I really think I am not nearly as angry about the past as I used to be.
- Anger and bitterness about being so young (late 20s) yet so sick. Before the IBS and IC kicked in within a month of each other, I had been semi-okay for a number of months, but before that I suffered from severe migraines for a year and a half. So I've really spent most of my mid and late 20s very sick. And now, I would take the horrible pain from the migraines any day over the stress and pain that IC causes. At least with migraines, there are coping mechanisms. When my IC is bad, nothing I do seems to make a difference.
- Anger and frustration about some career-related things that I currently can't change.
I am not saying I am willing to give up, but what do I do now??? |
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catspine
USA
239 Posts |
Posted - 02/08/2010 : 05:30:49
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One thing at a time Jamie
If you don't know what to do that alone creates frustration and builds anger and therefore more pressure etc etc so try to continue with what you know and what you CAN do and learn more in the meantime to continue: You say you have tms and it sounds like you already know what you can do about that but don't neglect what you shouldn't be doing either.
If you want things to change then you can not expect to do the same thing over again and expect a different result. Something has to give or at least for a while because you're pregnant and you need a break to allow you to catch your breath. At this point you still have a choice of what you want this to be .
Check my profile, 30 years of migraines, if I had known then what it came from chances are it would have been gone a few weeks after learning that but I never had access to the information and it went on and on and worse and worse.
I said you were being tested because it can get much better but it can get worse too if you persist in the wrong direction and maybe you don't know that because you haven't been there yet and there is no need really unless there is a lesson in there for you. Life is about learning. If you do something your mind and your body totally agree upon everything will fall into place effortlessly including your health. The power you have over that is the power to choose.
Fear can not exist if there is no tension in your body, just try to fear something while your body is in a totally relaxed state and tell me what happens.
That which angers you has control over you .
There are better choices than having to choose between migraines and IC . You do not want any of those! are you ready to accept the best of the worst just to generate more anger?
If I may ask why do you put yourself under so much pressure?
You seem driven to perform and achieve something beyond your reach yet but it's taking a toll although you keep it to a minimum. Also the drive to perform in itself can be enraging .
You are not as angry as you use to be ? isn't that a repression of an emotion right there?
Try to secure a position professionally and socially that allows you the time and space to fix your problem without having too much to sacrifice if possible. I wouldn't dismiss the possibility that your problem is emotionally based yet even for the part you can not explain so you need more time to figure it out. I respect your shyness but the lack of information about the sources of anger makes it difficult to be more specific with an approach so maybe you need to find a way to disclose that without too much exposure so people on this forum can help you better .
Breathing plays an important part to combat anxiety . An easy way to mask your shyness and get the air you need in a social situation is to laugh and take a deep breath while doing it.
It's not always easy but dependently on the kind of fear being in the moment works well too to stop anxiety when it appears.
Have you read a lot about all this things?
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Edited by - catspine on 02/08/2010 05:39:06 |
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n/a
48 Posts |
Posted - 02/08/2010 : 08:51:25
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I think there have been a few misunderstandings in what I was saying.
- I absolutely realize things could be even worse. When I had migraines, I thought on some level things couldn't get worse and that obviously wasn't true. Some people have worse forms of IC than I do, or have even more symptoms on top of it, etc.
- That's really all I was saying re migraines vs. IC. Of course I don't want either of them!
- I don't think it follows that because one feels less anger about the past that equals repression. Rather, I have processed a lot of what happened. I have had many, many conversations (and arguments, including very emotional ones) with my parents about some of the things that went on, and I understand better now why some things happened. I also didn't say that I no longer feel any anger - just that some of it has dissipated as I have partially forgiven some of the people involved. It seems that genuine forgiveness is a good thing in the TMS context, so why would you call that repression? I am not deluded: it still doesn't make it right that some things happened, but it is important to recognize that my parents love me and that they did the best they could in a very difficult set of circumstances.
I completely agree that the reason I put myself under pressure is fear. I am afraid of what will happen if I fail (especially professionally). I am in a job that was very difficult to get and - without going into personal details - you'll just have to trust me that leaving it is simply not an option financially. So I will need to find a solution within the context of remaining in my current job.
I was raised by parents that were also afraid a lot of the future, so worrying was a way of life for all of is. I now recognize that this is unhealthy.
The social anxiety is fairly easily explained. I was pretty shy to begin with (i.e. as a toddler), and then I ended up surrounded by children that made fun of me a lot. I had to start watching my every move because every little thing (a gesture, a sentence) was enough to mock me. This went on for years, and I was unpopular all the way through high school. I was also bad at sports, and so I became very self-conscious physically because people constantly made fun of me, didn't want me on their teams, etc.
As a result, when I walk into a social situation, the little child inside of me still expects to be viewed as the most awkward person in the room even when I objectively know this not to be the case. I still tend to view myself as an outsider because of spending years and years as one, despite the fact that most people don't think of me as a "freak" at this point.
Yes, I have read a lot about these things (including a bunch of Sarno, the work of Peter Levine and his followers, the work of Martha Beck, and a number of other things). I have also tried a variety of relaxation exercises (usual result: I fall asleep).
Catspine, you seem to be making a lot of assumptions about me, and that's why I am having some trouble following you. Why would you assume that I am trying to achieve something beyond my reach? I have more or less achieved what I set out to do professionally by this point in my life. It's a struggle for me to continue on to the next steps because it is a challenging job, but it is not beyond reach.
You say that I know what I need to do, but then in the next sentence you say that I can't do the same thing over and over again and expect it to work. Which is it? I know you're trying to help me, but I genuinely don't understand what you concretely think I should be doing, so I apologize if I am being dense.
If this helps, here are some sources of anger/frustration/bitterness (some larger than others):
- Whenever I have to deal with unfair and/or inefficient, irrational people.
- The feeling that the "weight of the world" is on my shoulders (i.e. "if I don't do well professionally, I and my entire family are in trouble").
- Again, for professional reasons, living in a city that is far away from where all my friends are (note: as I said, this is not something I can currently change).
- Feeling like I have to juggle a lot of things despite the pain, being pregnant, etc.
Further, I really don't know how to "have fun", especially now that the things I used to enjoy are no longer enjoyable because of the related physical symptoms (eating out, traveling, etc). I can watch a movie or whatever, but I don't find any of these things deeply fulfilling.
I am a goal-oriented person, and there are a number of things I am doing to change at least some of the external circumstances (though some of these will involve more long-term solutions than quick fixes). When I am mad at people with whom I can talk (e.g. my husband), I express my feelings and say what I want. I have come to recognize a lot of "goodist" and guilt-driven tendencies and I engage in self-talk about how I deserve to get some of the things I want and that I shouldn't feel bad about that.
I am more aware of my breathing (including in social situations) and make an effort to breathe more etc to not let the tension build up.
So honestly, I think it's quite fair of me to ask what it is that I am not doing. It's not like I am saying "I've been doing this for two days and I am not fixed yet, what is happening?!" No, we're talking about processes that have been going on for a long time and yet I see no change in my IC symptoms. |
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HilaryN
United Kingdom
879 Posts |
Posted - 02/08/2010 : 13:41:45
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quote:
I used one of the better-known TMS psychotherapists, and he was very nice but we both agreed after four sessions that there really wasn't much he could do for me any more.
Hi Jamie,
I'm puzzled by this. Why did he say there wasn't much he could do for you? Did he suggest finding another therapist? It's all very well identifying the traits, but it's not like one can just turn them off at will. I think it's helpful to have someone help you through it.
Have you been in touch with Abigail Steidley at all? She has dealt with these issues. My Internet's being v slow at the moment and I can't get her details, but she has a very nice blog.
Hilary N
Edit: Here's her profile page on the wiki:
http://tmswiki.wetpaint.com/account/AbigailSteidley |
Edited by - HilaryN on 02/08/2010 13:50:10 |
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n/a
48 Posts |
Posted - 02/08/2010 : 16:52:48
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Hilary: The conversation with the TMS therapist took place quite a while ago (a year or so?), and thus I may not remember all the details, but basically he said that I had good insight into my problems, my need to control everything and "play God", etc. He basically didn't know what to suggest to me as to what I should do. I actually think he is a very nice, compassionate man and did not want me to waste my money if it wasn't going to lead anywhere. He didn't suggest any other therapist or solution.
Abigail is the life coach with whom I worked, for quite a while actually (first by phone, then email). By the end, she felt that I had not sufficiently embraced the TMS theory and she said that if I wanted to continue working with her, I first needed to do Dr. Schubiner's course, then check out Monte's resources (runningpain.com), then take her course, and only then go back to individual sessions.
I may do Schubiner's course, I just wasn't quite sure that it would be different enough from the other things I'd already done. At this point, I think I do accept the mind-body explanation about as much as I would ever accept any theory. Of course there are doubts in the following sense:
I accepted the TMS stuff before, tried to follow the procedure and coaching tips, and then it did nothing. So then the doubts come as to whether it's the proper theory the same way that I questioned any of the particular physical theories of IC once the treatment wasn't working.
That said, I think mind-body issues are the most plausible theory of what's happening to me and it makes a lot of sense given my personality, the pattern of my life, and the fact that I have cycled through a lot of chronic symptoms before the IC/IBS (migraines, back and shoulder problems, Raynaud's Syndrome, jaw pain, tendonitis, etc). |
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catspine
USA
239 Posts |
Posted - 02/08/2010 : 22:48:59
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Jamie,
Thank you
Yes I am trying to help you and I'm glad you see it as what it is.
Sorry for the misunderstanding.
Now that you explained more about your struggles I realize why what I said was confusing to you and I'm glad you let me know. My statements and questions were not assumptions but more an attempt aimed at unlocking the situation you're in according to what you told us. Secondarily I was hoping it would generate different questions with different answers you could use to your benefit but it is clear now that you've done this already with accuracy and I understand your frustration from lack of results .
By the way is there any changes at all in your symptoms since you started working on it?
So let me clarify here:
I said you know what to do in regard to TMS I meant to apply and use the knowledge you acquired and it looks like you already did.
Please don't apologize for being dense, things are no always simple. Commonly we think it is what we do that's not working or not enough but it may just as well be what we don't do because we simply don't think of this option. It can be a path we did not explore or a possibility that was not logical etc. Again this was just a general suggestion to explore a new territory nothing personal.
You're right forgiveness is a very good thing in the TMS context.
Your childhood and your family have patterns likely to overlap but it sounds like the responsibility on your shoulders at the moment is the #1 problem.
quote:
I completely agree that the reason I put myself under pressure is fear. I am afraid of what will happen if I fail (especially professionally). I am in a job that was very difficult to get and - without going into personal details - you'll just have to trust me that leaving it is simply not an option financially. So I will need to find a solution within the context of remaining in my current job.
I think you can disarm this fear efficiently with something that makes the idea of losing something you care for less unacceptable...and then move on to the other problem. What if you prepare for a spare solution to the possibility of losing your job and the consequences of that if your health fails you, even if none of it going to happen it would cover any of the job related issues including those you have no control over e.g. outsourcing or something like that.
A technique like this one may help you but maybe the reason why your effort did not produce the expected results yet is because you can not embrace the theories you explored.
In Dr Sarno's theory the unconscious has a particular meaning with a a role and a function of memory difficult to access and we have little or no control over it . And in the case of TMS we get ourselves in trouble when all of a sudden the unconscious does as it pleases.
If your values are different because you 're an outsider or simply don't believe in what you read you 'll understand the theory but you'll have trouble basing a cure for yourself upon this approach.
In an other cultural tradition for example the equivalent of the subconscious/unconscious has a role to serve the body in all occasions, its primary function is memory and it also obeys orders from the conscious mind. I would say it works a bit like a computer packed with all you need but waiting for the best decision it can recognize as such but confused and ready to crash if it doesn't come.
Unfortunately there are always pros and cons in everything so this wouldn't be perfect. I mentioned this tradition because there's a lot in it that is used by goal oriented people.
Of course I simplified a lot here but the point is: imagine how that changes the whole picture. You can either be a victim or a decider in the process to healing... dependently on the theory .
You may have to change theory if the one you studied doesn't work for you and there are other theories out there including this one. This is what I meant by mot doing the same thing again and again.
You definitely have the potential to get your life back Jamie and all the fun that comes with that but as you know all of this takes time.
Hope there was some in here for you.
.........................................................................
I just read your last post before sending this . At this level of efficiency I find it odd that you can not make something work for you . It sounds as if you have all it takes but the formula doesn't work. As opposed to what you've heard from the competent people you saw in your quest for help I believe something can be done about it but you just haven't found it yet, there always is an answer. You're never given a wish without the power to make come true.
As you said, I also believe mind-body issues are the most plausible theory of what's happening to you .You're very rational and sharp and it only takes a relatively short time before the rational information you processed is understood and accepted but for some reason it doesn't work! you were told you may not be finished yet with the classical approach but it didn't work before either. I ask myself why.
So.
This thought may be challenging to you but what if what would work was an irrational explanation instead and you were not aware of it lets say simply because the unconscious is supposed to be irrational? Sometimes we need a little bit of magic to get things done. Not much but long enough that it can do what you need it for.make room for luck. You've got nothing to loose really. What if you don't ask yourself any question? Let yourself be charmed and see what happens.
Still trying to help somehow.
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Edited by - catspine on 02/08/2010 23:21:12 |
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hopeacres
USA
27 Posts |
Posted - 02/08/2010 : 23:17:58
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Hi Jamie,
My heart is heavy for you. I am sorry for all you are going through. I have suffered with IC for 16 years; 4of those years it was pretty much gone only coming and going here and there. However, 6 years ago IC came back and it has been a VERY difficult journey.
I have also dealt with IBS, severe neck pain, back pain, hip pain, and chronic fatigue. I do not minimize the pain and suffering of any of those symptoms, for can be quite debilitating, but I can honestly say that IC has been the very worst for me.
IC is not only excruciatingly painful but it can cause shame and feelings of less than as a woman. I am married and in the past I have allowed IC to powerfully affect my confidence as an attractive and appealing woman to my beloved husband. These feelings of shame only increase tension which increases the IC symptoms! Vicious cycle...
I do not say any of that to discourage you. I have a 'hope' story so please hang in there!
Almost two years ago I came to the 'end of my rope' and felt like something had to give because I could not go on like this anymore. I literally cried out to God for direction; giving up all that I had been doing nutrition wise, massages, chiropractors, medical doctors, naturopaths... I gave up my way and just surrendered. I no longer had the answers. That was a very dark time but I also felt hope for the first time. It was like God wanted me to get to that place of giving up and surrendering to Him... I can't explain it. It is about my personality; trying to control and fix myself. I finally realized I could not fix 'this' and I desperately needed help. Relying on God who made me and I sensed really did care about me and love me... I was finally looking beyond me and my limited abilities.
Long story short; which I shared on this forum before... I stumbled across Sarno than Dr. Schubiner. I know it was an answer to that prayer sobbed out in my office! I took Dr. Schubiner's online course. I highly recommend it. What was amazing as I began to work through Dr. Schubiner's course is I learned that I was in control of my emotions, my brain patterns, and the thoughts I chose to believe or not. I realized that I really was in control of recovering from what I now knew was a mind/body syndrome. I learned to fight the right battle and no longer waste my energy on diet, supplements, and worrying that I really did have some serious medical disease. Yes, I still eat healthy but not because I think it is the cure; for I now know IBS and IC are not physical diseases!
For the first time in 6 years I now go long periods of time completely IC and IBS symptom free. I recently went over 2 months without any pain! I am healing for sure. IC and IBS flared up around the holidays. I spent a lot of time going back to my writing assignment through Dr. Schubiner's course and I am back to having a long pain free time. I know, like pericakralj, I will soon be pain free for years.
As I read your post to Catspine as to why you feel angry here is what I recognized: feelings of being out of control and feelings of self-rejection (such as the fear of looking like a 'freak' in public). I strongly relate to both.
I have realized that when IC acts up for me it is almost always rooted in two things: 1. Severe self-rejection (self-hatred) 2. Feeling out of control; without choice.
I have a history of abuse which has created strongholds of fearing 'out of control' and 'victimized' and a fear of being rejected. These are the areas I have targeted in my own healing journey.
When IC flares I now ask myself, "Do you accept you? Do you love you? Do you fully embrace you?" along with "Do you feel without choice right now? If so, why? How can you regain your freedom to choose right now or in 'that' situation?
I hope something I shared offers you some hope and even perhaps some direction.
You will be in my prayers. Jamie, I suffered from mind/body syndrome for all of my adult life. I allowed MBS to steal a lot from me. However, I am now walking in freedom like I never knew before and I know the best is yet to come. It says a lot about you that you have not given up. What I have needed the most when I was in a place of feeling stuck and in great pain was hope. I sure desire you to be filled with hope! There is hope. You can heal! |
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n/a
48 Posts |
Posted - 02/09/2010 : 18:43:16
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Thanks everyone. hopeacres: Your story is definitely encouraging. Maybe I really should try Schubiner's course (and honestly, at this point 250 bucks is a drop in the bucket with all I've spent).
I agree that IC is much worse than a lot of the other symptoms. For those who don't have the disease but would like to understand it (e.g. someone who's married to an IC sufferer), try this: drink a ton of water, at least a quart. Then you're not allowed to go to the bathroom for six hours or more. No matter how painful it gets, you should go about your daily life and "distract" yourself from the pain. Well, for those of us with IC, that's what living is like day in and day out. The stress of it is unbelievable, and it really does feel demeaning as a woman and a human being generally.
While I found ways to function during the worst migraine attacks, or while I find ways around the IBS, the IC is in a category of its own. Ignoring it and going for a walk or drive can end in disaster (read: a frantic search for a bathroom while it feels like one's bladder is going to explode from the pain). The focus here really has to be on mind-body prevention somehow because I think even some sort of Buddhist monk wouldn't find one's way out of an attack!
As to the self-acceptance point: I don't feel as if I hate myself per se, but I am definitely self-critical and analyze little things I said in conversations, feel awkward about them, etc. I suffer from the whole "spotlight effect" where I am extremely self-conscious including when other people probably didn't notice a thing. My professional environment is ultimately also an unforgiving one in many ways (e.g. people really will remember years later that such-and-such gave a bad presentation on a topic - talk about things that will make you even more self-conscious!). I think at times I am torn between wanting to be noticed and wanting to disappear. I recently became conscious of the fact that I love wearing sunglasses because it gives me a layer of protection from the world. And people have no idea that I am really like that, some even feeling that I have quite a bit of charisma etc.
But no, I don't think I fully embrace myself or any other person for that matter. I don't seem to "love" myself per se because on some level I have trouble even evaluating what that means, but I am proud of a lot of the things I have accomplished despite challenging circumstances. Not to sound arrogant, but I am a better person than a lot of people that I know. So in that sense, I don't think I have a view of myself as this particularly sucky individual, if that makes sense, but I am still hyper-aware of the ways in which I could improve and also of the ways that other people suck. ;)
As to feeling without choices: this is definitely something I've encountered a lot in my life (Martin Seligman's term "learned helplessness" is really applicable here). When I was bullied as a child, there was nothing I could do. I was going back and forth between a school situation that made me really unhappy all the way through high school to a home that was filled with tension and people fighting. I felt that nobody was listening to me and doing anything to change things at home (except my dad, but his hands were bound as well in terms of how much he could accomplish). I am now in a career that is very stressful but on which my family completely depends. I want to make sure to spend part of my maternity leave really engaging with these mind-body issues in perhaps a bit more of a relaxed environment.
The issue is also that even trying to minimize how much I do for work comes with other big drawbacks. Doing so actually means reducing my chances for a more satisfying future career development that could come with more of the things I want. So I end up falling into the same trap again that took me here in the first place: stressing myself to death in the present in the name of a better future.
That's really the story of my life. I've been unhappy as far back as I can remember (think like age 6 or so). But I always told myself that if I just work harder, I just do this and that and the other thing, life will get better.
And - right before the IBS and IC started - I had actually just reached a stage when things were actually looking up. At the time, I was about to move to a pretty nice city where I had lined up a very promising job. I had found a good man (my now-husband) who had also - after all kinds of complications - secured a position in said city. My migraines had been gone for a number of months. Life looked like it was about to finally fall into place when BOOM, the rug got pulled away from underneath me.
I went through a stressful episode where I was given reason to believe that I may have a particular health condition that I turned out not to have, but there was some drama over several weeks. I went through a stressful situation with a co-worker. I had just survived a year of all sorts of professionally related stress, with few breaks even on the weekends. And so it all collapsed and yes, even now almost three years later, that @#$% makes me REALLY mad!! I mean, I thought I was close to being decently happy. Maybe not thrilled about it all, but life would be okay.
So I definitely felt as if the world hates me. As if the world would never, ever let me be happy, and would find ways to destroy everything I had worked so hard to achieve. I am not religious, but I definitely felt like if there is a God, he must hate me (and please, I am not trying to engage in some religious argument here - I am just telling you how it felt at the time).
But despite being sick, I had to hide it as best as possible at all my future jobs or interviews. People (for the most part, with notable exceptions) continued to make all kinds of demands on me as if nothing had happened when my life was falling apart. And yes, that still makes me really, really mad, too!
In one sentence, I am sick and tired of being expected to be Wonder Woman. People think that just because you continue to perform (at least more or less), you must not really be doing that poorly. They don't see that some of us are basically moving mountains on an everyday basis to do what we do. And because we do it, it keeps being expected of us.
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RageSootheRatio
Canada
430 Posts |
Posted - 02/09/2010 : 19:52:54
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I was fairly successful a couple of years ago using the TMS approach re my "sinus headaches" and migraines ... then last year my doctor dx'd IC (symptom imperative!) which I completely rejected as a dx, and I declined to check out the dietary suggestions he recommended, nor was I at all interested in any of the meds he suggested. I don't have a severe case at all... (I think partially because I rejected the dx and tried to stop checking to see how bad my bladder was .. the more I thought about it, the worse it got! Basically I just ignore it.) I haven't taken the time to work on it as TMS so not sure I can be too helpful here, but wanted to add my voice of support.
I think one important thing to remember is what Dr Sarno calls the Rage SOOTHE ratio ... it is not just about finding or expressing the rage or whatever .. but also trying to limit the "reservoir of rage" by having enough SOOTHING things in one's life. I am not very good at this yet myself, but I do think it is incredibly important!
Also, I totally relate to this:
>In one sentence, I am sick and tired of being expected to be Wonder Woman. People think that just because you continue to perform (at least more or less), you must not really be doing that poorly. They don't see that some of us are basically moving mountains on an everyday basis to do what we do. And because we do it, it keeps being expected of us.
I am learning that I need to set limits for myself, no matter what other people expect. I am learning this ability which I missed as a child, through "Emotional Brain Training" (EBT -formerly called The Solution Method) which one of the people on this board introduced me to (thanks MizLori!) EBT is all about learning two important skills: limit-setting and self-nurturing, two things which I have really needed to learn.
RSR |
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HilaryN
United Kingdom
879 Posts |
Posted - 02/11/2010 : 16:23:57
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I'm just reading The Pathway (that's the same as The Solution which RSR mentions) and enjoying it - it's a down-to-earth book which teaches you to create a nurturing voice in yourself which may have been missing in your childhood.
One thing I like is that the author says that people don't reach their "Solution" (e.g. in the case of TMS that would be resolution of symptoms) until they have done enough work on themselves. That just means that different people need to do different amounts of work - perhaps it depends on the amount of nurturing they had in their childhood.
So don't despair, Jamie, I know it's not pleasant, but I'm sure you'll get there.
In addition to hopeacre's heart-warming story there are also skizzik and marsha who have taken a long-term approach, so you're definitely not alone.
Hilary N |
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marsha
252 Posts |
Posted - 02/11/2010 : 21:17:18
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Monty’s posts have been instrumental in my recovery.
Also a post from la Kevin “A Cherokee Story” helped me see that I couldn’t get better if I kept reinforcing pain ,anger, resentment and sadness .
Maybe he will post it again.
Most of all I have discovered it is just fine being Marsha. I can be me.
I love her warts and all.
Marsha
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golden_girl
United Kingdom
128 Posts |
Posted - 03/29/2010 : 15:48:39
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Hi Jamie,
I've just come across this post and thought I would add my 2p worth (or 2 cents!!)
I too have IC symptoms - for the past 5 years. I say symptoms, as my anxiety was at such a level that I couldn't even go for the tests to be diagnosed (drink 2 pints of water and have an ultrasound; lie for an hour without being able to go the bathroom, on a stretcher (gurney?! I'm English, so I think that's the word!) and have a cystoscopy... etc. I just couldn't.
And for good and for bad, I knew (and know) that my bladder symptoms are psychosomatic, are TMS, are symptoms of anxiety - whatever you want to call them - because, although my personality is so much different in many ways than yours, I could see the "TMS" history of my life. I'm only 28 now, but in my school years there was panic attacks, hyperchondria, IBS, OCD, all sorts of unexplained pain... the list goes on.
I too had email counselling from Abigail, and she helped me a lot. No, she didn't cure me, and I had for so long looked for the cure (non-acidic diet, bicarbonate of soda, aloe vera capsules, even looked into random internet cures such as fibromyalgia (when I had odd muscle pains) and guaifenesin... it got weird!!) But looking at my thoughts, and reading (such as Byron Katie), and just realising that everything I thought was unassailably true had even the slightest possibility of being false - it all helped.
There isn't, or often isn't, a one step cure. It's frustrating, and annoying, and there's a lot of WHY ME's and WHY NOW's, but maybe the fact that I'd had anxiety in my childhood and teens, showed me that this, this "IC", is just another anxiety symptom. And calming down the WHYs, helps. Instead of being stuck there, you can look for a WHY NOT, or a WHAT ELSE INSTEAD, and a WHAT NOW.
I came across Sarno first, and that too has helped as it led me to a more conceptual diagnosis. However, my "cyberchondria" combined with Sarno's ideas for a time appealed to my fears, in a way, as I thought I must be hiding some deep down hideous abuse (I know of the not-pleasant things I endured as a child, I doubt there was/is something I've deeply repressed, if you know what I mean) but I think I also knew, deep down, that there is nothing really wrong with me, and really, the way I've thought - about myself, my family, others, the whole goddamn world - has affected me in ways I can deal with - if only on the surface - but this might lead me to more relief than I ever thought possible in my darkest hours.
I apologise, as it is easy to take someone's problem and address it only as talking about one own's problem ("I've got a problem with my job/boyfriend/dad" "OH! Well let me tell you about MY problem, it's SO much worse!!" Like that'll help....  ) but -
I have learnt, there is no one "cure". There is only adapting how we think. And there is many ways and approaches to do this. I've read quite a few books, read quite a few different angles on ways of thinking and a book that did help me is: http://www.amazon.com/What-Say-When-Talk-Yourself/dp/0671708821
Just the idea that I really do spend all day talking to myself that I'm a bad person; that everyone in the world agrees with that; that I can't do anything, or anything right - and on a more specific note - that yes, I need the bathroom NOW; that even though I didn't need it 5 mins ago, I DO need it now, - it's not true, and it doesn't help. It sounds simplistic, but how about - I am ok, right now; I'm doing the best I can, and that's ok; I'm good/nice/friendly; that that person/my friend/myself doesn't believe I'm horrible...
I've not been "lucky" enough to see such direct correlation between my thought(s) and my symptoms - it's an ongoing... (I want to say battle, but no) situation?? But everytime I tell myself, in my head, that I don't need the toilet, and no, I am not hated by the whole wide world, I "win" a little.
I wish you all the very best, as I know - more than you might realise - how awful this can be. No, I'm not "cured" or "healed", but I'm a lot better than I was, say, two years ago (when I couldn't leave the house..) and I'm a lot better equipped in a lot of ways to deal with what life throws at me. If every day, I get 0.1% better, and even if there's some days when I go what seems like 10% back, then I will still feel better in the end. I know what it's like to feel
"I've been unhappy as far back as I can remember (think like age 6 or so)."
But this:
"But I always told myself that if I just work harder, I just do this and that and the other thing, life will get better."
I don't think is the answer. If there is an answer, it's:
"If I just accept myself more, if I just do this and that to help myself and the other thing to love myself more, life will get better."
That sounds cheesy as hell, but I think it's true. Truly. And it doesn't mean sitting on a hilltop chanting and meditating, or taking 6 months off work to "get well" - it can happen every minute of every day when you tell yourself you're a good, decent person, and you deserve to feel good. Illegitimi non carborundum
Best of luck (and let me know when you're better )
"F.E.A.R.
Forgive Everyone And Remember
For Everything A Reason"
Ian Brown |
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golden_girl
United Kingdom
128 Posts |
Posted - 03/29/2010 : 16:05:02
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ps -
Another thing which helps me is:
Instead of the Sarno approach of - there is something desperately wrong, hidden in your subconscious, and the pain is a distraction from these terrible feelings, which you must make ways to find, otherwise the pain/distress will continue, but delving into it will help you be well.
How about:
There are things you KNOW full well about, which are causing you day-in day-out stress and tension and THESE are the problems which are causing your pain/distress, and you can take steps to lessen them, and this will diminish your pain/distress.
By this, I don't mean give up your job and responsibilities, but acknowledge the demands you are putting on yourself, that others are too, but you are probably putting more on yourself, and treat yourself better.
Instead of - a bad thing is in your subconscious and to distract you from it, you have pain; how about - there are stressful things in your daily life and these are causing you pain to ALERT you to the stress!!
Be proud of all you have accomplished, and find ways to alleviate your everyday stress.
(A helpful book, if you haven't come across it is: http://www.amazon.com/gp/product/1591810647?ie=UTF8&tag=daclmd-20&linkCode=as2&camp=1789&creative=9325&creativeASIN=1591810647)
"F.E.A.R.
Forgive Everyone And Remember
For Everything A Reason"
Ian Brown |
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Continued struggle with IC, need support
