staying positive and tough as nails on the outside, but tired on the inside

[rabbit]

I know I'm doing great. This forum has been inspirational. I'm reminding myself of all the evidence that my leg/butt/tailbone/numbness/aching/cramping/tingling et al is TMS. The list alone is proof enough. I am thinking about the times when I am not in pain (there ARE times) when I am happily distracted and present. I am walking, pushing through pain, doing things that scare me, making plans that scare me, working with a TMS coach from the pain psychology center, seeing my own therapist, reading... all good stuff.

I've been talking to my spouse about it (educating him, trying to figure out ways he can help and things that will help/not help - suggestions appreciated !) and realize I sound like a real trooper that's gonna not let my brain sabotage my life. And I really am pushing through pain, trying to distract myself, and, sorry for the self pity here, not falling apart despite my brain's latest trick to cause intense cramping or whatever it is while I try to go to sleep and while I'm waking up, and sometimes waking me in the middle of the night hurting so badly I want to cry.

I love to travel, and my motto is that I'm taking my leg to see the universe whether it hurts or not! I've stopped taking painkillers by about 90%, gave up the pillow between my knees a night, not using a heating pad obsessively.... All sounds great, right? But inside: can i really keep this up? I can appreciate outcome independence but I want this to end and my brain wont give up. I'm both getting mad at it as recommended it, but also doing the taking care of the inner child bit too. Yesterday I gave the parent who didn't provide the kind of support and nurturing a child should have a piece of my mind (in my head that is) and it helped.

Funny thing is we have a wonderful relationship now - and I got a nice email from them this morning! Deal is the parent can handle and enjoy an adult child but wasnt able to be there in the ways a parent must. Pretty standard stuff - parts of my childhood messy and sad and "traumatizing" and left some rough baggage. I just cant get past the pain thing and needing people to know how much it hurts. I'm not actually telling this to people, because i wont let my brain win, but damn it, it hurts. And well, the inner child sure does not like that!!

I feel like I am stuck in a cycle of perpetual extinction bursts (looking at the history, even before a TMS lens on this, I was having what look like extinction bursts). I have an incredibly obsessive personality and something think my brain will win.

Thanks for listening.

 

[Aaricia]

Hi rabbit,


Thanks for the post. I feel a lot like you. For the past few weeks I was doing great. I also gain a lot so I decided to do some exercise and when my weight went down the pain come back again. So as I stand here knowing the I need to start doing all of SEP again and meditations and I feel devastated.
I cry and get nervous again thinking how long it will take me to recover.
I want to be in control on my body, I will be the on who will decide what my weights is going to be not TMS.

Take care and lots of positive thoughts to you!

 

[Walt Oleksy (RIP 2021)]

Hi, Aaricia. I think you will have greater and faster success with TMS healing if you
aren't anxious about how long it is going to take to recover.

Yes, go back to the SEP and work on whatever practices you think are the most helpful.
For me, it was journaling. That helped me realize I was repressing anger and other emotions
back to my boyhood. It led me to forgiving everyone including myself, and my back pains topped.

 

[alexandra]

I feel the same as both of you ladies, I was an acrobat before the pain started, I have been exercising every day of my life since I was 12, I am 35 now. It's extremely frustrating to not be able to do things I enjoy. I also get to the point where I am getting more fit and the pain gets worse, I know it's fear. I fear losing my fitness again and of course fear of pain. I have achieved almost pain free many times in the 4 years since the pain started, it has taken me so long because I haven't committed to the work until a month ago. Good luck to all.

 

[Aaricia]

Hello alexandra,

Can you please explain me more what do you mean by" I haven't committed to the work until a month ago". What do you mean by work - workout, going back to work?
I was thinking about give up and stop exercising - I feel that I will be able to calm down my TMS, in few weeks again, but I have a feeling that it will be just pushing the problem away in time. It's still there and takes control on me when it comes to work out. If I will give up working out, it will find something else.

Thanks Walt for you advice - I hate journaling but I will try to start again. I've discovered many things - I was still angry and didn't forgave my ex fiance that he left me, 6 moths before wedding without explanation. For sure there is something more...

Thank you guys, you are great antiTMSteam!

 

[Andy Bayliss]

Hi Rabbit,

I feel like I am stuck in a cycle of perpetual extinction bursts (looking at the history, even before a TMS lens on this, I was having what look like extinction bursts). I have an incredibly obsessive personality and something think my brain will win.

I hear that you have a frustration and hopelessness with the perceived stuckness and you don't know what to do about it. I am sorry for what you are going through. We are built like little pressure cookers, and it may be helpful to just feel that rage or hopelessness about what you see as being stuck. What you describe, the angst, can be seen as contributing to your symptoms, plain and simple. Just seeing this, not pushing it away, and appreciating your suffering for what it is in this moment may help you come to more ease. There is stuckness and suffering...

My guidance for you (even though you didn't ask!) is to feel what that feeling of being stuck is, the texture, in your body with your therapist or coach. The mind will go on and on, but the body can resolve things because it just feels, and is matter-of-fact about it, if we don't get swept away in what the mind thinks about the feelings. It is not easy, but it is the most skillful means.

Mostly I wanted to say I am sorry about all of it for you: the fear, the tension required to will yourself through the pain, the frustration that things aren't shifting for you. Hang in there with your support team, and keep feeling!

Andy B.

 

[alexandra]

By doing the work I mean the emotional work which is very important for healing. The journaling, daily affirmations, talking to your brain, meditation etc all the suggestions that dr sarno wrote about in his books and the authors of other TMS books as well. I hate doing all the emotional work as well but I believe it's the reason why I haven't healed completely.

 

[alexandra]

Dr sarno suggests to continue with daily activities to the best of your ability, he suggest either pushing through the pain with out fear or wait until your symptoms subside enough to exercise etc...he says we must not be intimidated by pain and get on with life as if the pain didn't exist.

 

[rabbit]

Ab

Hi Rabbit,



I hear that you have a frustration and hopelessness with the perceived stuckness and you don't know what to do about it. I am sorry for what you are going through. We are built like little pressure cookers, and it may be helpful to just feel that rage or hopelessness about what you see as being stuck. What you describe, the angst, can be seen as contributing to your symptoms, plain and simple. Just seeing this, not pushing it away, and appreciating your suffering for what it is in this moment may help you come to more ease. There is stuckness and suffering...

My guidance for you (even though you didn't ask!) is to feel what that feeling of being stuck is, the texture, in your body with your therapist or coach. The mind will go on and on, but the body can resolve things because it just feels, and is matter-of-fact about it, if we don't get swept away in what the mind thinks about the feelings. It is not easy, but it is the most skillful means.

Mostly I wanted to say I am sorry about all of it for you: the fear, the tension required to will yourself through the pain, the frustration that things aren't shifting for you. Hang in there with your support team, and keep feeling!

Andy B.[/QUOTE
Andy and all - thank you so so much
This support means so much

 

[Boston Redsox]

I feel the same as both of you ladies, I was an acrobat before the pain started, I have been exercising every day of my life since I was 12, I am 35 now. It's extremely frustrating to not be able to do things I enjoy. I also get to the point where I am getting more fit andhe pain gets woI am getting more fit and rse, I know it's fear. I fear losing my fitness again and of course fear of pain. I have achieved almost pain free many times in the 4 years since the pain started, it has taken me so long because I haven't committed to the work until a month ago. Good luck to all.

Alex
What you said about: I am getting more fit but pain getting worse that was happening to me, I think in my case I was challenging the pain and working out for the wrong reasons? So I slowed down a little and said to myself is that I am working out for better health and not my pain…I think that challenging the pain is a away of fighting against that makes it worse?

 

[Walt Oleksy (RIP 2021)]

Hi, Alexandra.
I took Dr. Sarno's advice this morning about keeping active with activities around the house.

We're having a spring snowstorm in the Chicago area today
and I needed to clear the walk of 4 inches of heavy, wet snow, to my front door.
I got the shovel and did it. I don't feel any pain, just a little discomfort.

Not bad for almost 85.

 

[Aaricia]

Walt that is great! You are my inspiration for today!
So happy for you. I'm going to do yoga class in the evening, for the first time in two years.
Take care!

 

[alexandra]

Oh my goodness Walt you are amazing! And yes Boston exercise has been my obsession which comes from low self esteem or more so low self body image. Now days I am doing activities outdoors and practicing mindfulness by observing the beautiful things around me as I go on my daily hike. I have let go of the pressure I used put on myself while being active. I was an acrobat, I competed and won many times. The tremendous pressure I felt is what began my pain in the first place, my impossible goals, my inner child couldn't take it.

 

[alexandra]

Oh and dr sarno says to exercise for health , benefits and pleasure but not to fight the pain!

 

[armchairlinguist]

@rabbit - if you are tired on the inside, what would it mean for you to show this on the outside?

Just be tired. That's your real feeling! "I'm taking my leg to see the world" - that is a great goal (very inspiring to me - also with leg issues, a foot in my case) but it is also a LOT! How about just taking your leg around the block or around town first?

Do things at your own pace. Sarno suggests not giving in to the pain, but that doesn't mean that every second has to be about defeating it, either. What about just a normal day? Go to work, go to the gym, go shopping, go home, sleep?

Relax and let life be a little. Too easy to apply perfectionism to TMS recovery as well as to TMS.

 

[rabbit]

Andy, I was thinking more on what you wrote, it was really helpful. In your reply, you were talking about not getting swept up in what the mind thinks and does with respect to the physical feeling in the body, correct? For me, I am able to do this up to a point - at some point the pain "wins" because it is just too painful. I am sure this happens b/c I am still focusing on the pain. I can allow the pain to be there and be "ok" up to a point. For example, I am so grateful for work because very often it truly distracts me and I'm not in pain or not caring about the pain. But for example now at night - there is clearly a new conditioned response as going to bed used to be such a relief - that right before bed the pain gets horrible, and lying in bed trying to sleep is more painful than I ever could have thought. I know trying to force myself to sleep, force myself to not focus etc isnt the way to go, and I'm trying but every time my TMS brain notices I'm thinking about something else or notices the pain letting up, within a millisecond, the pain is back full force. As I mentioned, it used to be sitting, now its lying in bed or walking. These activities seem to give the brain the most space to let TMS take hold. Not really sure what to do at night - there is only so much accepting etc I can do when the pain is that bad. I can detach from the thoughts about the pain but only to a point. I feel if I can get past this I could be a Buddhist monk!

Armchair, I liked your reply, thank you, it really resonated. I have never thought of myself as a perfectionist, but as being a BAD perfectionist! Talk about ironic. That while sometimes my perfectionism pays off, it could pay off more if I've got that quality instead of creating the havoc and mess due to procrastination that it does more often than not! I'm clearly putting pressure on myself, but I can't really identify what exactly the pressure is. I guess I am pressuring myself to be better b/c not being better is really crummy. Strangely, at the same time, I see this all as a gift - the pain has forced me to look at things, myself, and I find that certain things are changing for the better. Maybe just thanking the pain for what's its allowing to happen is what I can do.... But to borrow a metaphor, the wizard behind the curtain has been revealed, why does the wizard still manage to work its magic on me?

 

[Ellen]

Hi Rabbit,

Something that has helped me when the pain is so bad that I can't distract myself from it, is a meditation technique that I've heard called different names (Focusing is one). Instead of ignoring the pain, in this meditation technique you put all your attention on the pain, but you do it without judgement. You experience the pain without interpreting it or thinking how awful it is, or getting into any internal dialogue about the experience of it. Instead you just notice it, its properties, its boundaries, how it moves, maybe what color it is, etc. You just allow it to be what it is. (My pain often starts to pulsate a bit at this point.) Do this for about 10 minutes, and then on the out breath, tell it to "soften and flow". Do this for another 10 minutes or so. Like any meditation, when your mind wanders, just gently bring it back.

There is a free guided meditation on this website that somewhat follows this technique called "Soften, Soothe, and Allow" :

http://www.mindfulselfcompassion.org/meditations_downloads.php

I hope this helps.

 

[armchairlinguist]

I guess I am pressuring myself to be better b/c not being better is really crummy. Strangely, at the same time, I see this all as a gift - the pain has forced me to look at things, myself, and I find that certain things are changing for the better. Maybe just thanking the pain for what's its allowing to happen is what I can do.... But to borrow a metaphor, the wizard behind the curtain has been revealed, why does the wizard still manage to work its magic on me?

Man, if I knew that I wouldn't be hangin' around here. Sarno says that some people are cured just by knowledge, and others aren't - sometimes it's conditioning, sometimes needing to deal with emotional stuff, sometimes that even if we know the wizard is behind the curtain, we can't stop looking at the show because it's so fantastic (for pain this would be so tricky/intense).

I relate a lot to what you said. For me the period following my first bout of TMS (2003-2006) was a period of discovery. I was in therapy 2007-2009 (after I recovered from the pain it turned into depression, and I really needed some help) and learned a ton about myself and really changed how I relate to myself in a lot of ways. So it was a gift, but it also sucked and both of those things were equally true. And right now I feel just like you do - not being better is so crummy, and I'm really mad about it sometimes and I want it just to be over. But it's going at its own pace. I am still a perfectionist and somewhat goodist (I like being reliable and helpful) and tend to be stoic, and those tendencies cover over my day to day feelings and push through and keep calm definitely impact me over the long term and so it's not too much of a mystery how it came back. It sounds like they might impact you as well.

How much of your time/attention are you spending "doing TMS"? Maybe try to do less of that, and a bit more of something else that's a little fun and relaxing.

 

[rabbit]

Ellen, the soften, soothe allow meditation is great. Thank you so much. I've been using it a lot. I am looking forward to the other ones.
I do so much better with guided meditations than on my own.