Short (well, sort of) story of pain

[Wildflower6]

Well now, I think I need to look more seriously at the constant battle between my irrational need for perfectionism and my rational desire to let things go.

Awesome discussion, @Manjuno and @Cactusflower!

I recently read this quote on perfectionism:

“Spare me perfection. Give me instead the wholeness that comes from embracing the full reality of who I am, just as I am. Paradoxically, it is this whole self that is most perfect.” —David G. Benner

 

[Manjuno]

It's been over two months now and I'm not doing very well, I'm afraid.

I have this feeling that I can't really begin the healing process until I get out of the stressful situation I'm in. The problem is that I have no control over the situation. The person closest to me is suffering a lot due to illness and some other issues and I'm too emphatetic to not let it get to me. I guess my problem is that I still desperately need everything to be okay and can never agree to things not working as they should. If any part of my life is not fine, I can't possibly be happy and I'm doing everything to fix the issues. And when I can't, I'm starting to fall apart. I wanted to find a pattern to my pain flare-ups and I think it actually gets worse every time my significant other is suffering (or rather every time she can't help but show it). And for months now she's being hit with one problem after another, from every side, and it seems like there's no end to it. I need to get better to be there when she needs me. And instead every time she falls down, I immediatelly fall apart too and blame myself for not being supportive enough and succumbing to my own suffering instead. Is it possible to cure TMS when being constantly exposed to the very factor that makes it worse? What's the strategy here?

Now, about my other discoveries. I'm definitely in my worst state in the mornings. I must be very tense while sleeping because my body feels like being tied with a rope for hours every time I wake up. Another thing to note is that whenever I leave my apartament to do things and interact with people, I start getting better. I'm at my worst when staying alone indoors. Physical activities help. But then, too much interaction is overwhelming and sends me in a state of exhaustion so it's a delicate balance. Also, I get stressed when I have something planned, like meeting with a group of friends, going to an event etc. Any kind of non-standard day-to-day interaction. So all the time leading to the event is very stressful, then the event itself is usually fine and oftentimes pain free, and then I'm completely exhausted for a day or two afterwards. It's not an easy cycle.

And it so happens that in 10 days there's a massive event in my country dedicated to things that interest me. I bought the ticket, rented a place to stay and... now I'm having doubts. There will be crowds there. There will be chaos. There will be lots of unplanned interactions. I just don't know if I can handle that and won't be immediatelly overwhelmed. I have no experience with exactly this kind of event but this is something down my alley and I'd like to go. On the other hand, I'm scared as the biggest onset of my pains began after another crowded event where I interacted with a lot of people, felt that the interactions weren't going very well, got stressed out, started feeling pains which stressed me out even more and made the interaction even harder. At the end of the day I was a wreck and soon after my ailments set in (as a direct consequence, I think). Then again, avoiding things is exactly what I shouldn't do when fighting TMS, right?

On the positive note (yes, there is something positive!), I've been told that I seem better since starting the TMS approach. That is until these new setbacks, I assume, because right this moment I don't really feel better. The meds prescribed for my anxiety are within my hand's reach and I've been fighting the urge to go down the medication route for many weeks now. Still, I have hope.

 

[Cactusflower]

@Manjuno
It is absolutely classic tms to feel better when you go out. Especially if your mind is equating home with stress. When you go out your mind is not so hyper focused on your situation.
I too am very sensitive to my partners moods/emotions. When I find myself in that thought I remind myself it is not my job to feel for them, and turn my mind towards my own feelings and emotions to try and feel them without judgement. Nobody has to know my true feelings except me. Nobody is there to judge they are right or wrong.
Is your partner receiving care outside of you or the home? If so remind yourself it is their job to do their job. You can not do that job, just be supportive - which is not feeling their feelings. Be gentle to yourself through all of this! Your suffering is no less because your partner is suffering!
You can not care for another well without first caring for YOU! This is at least much of your suffering, not attending to your needs. Go out! Journal about your guilt and shame along with the need to care for yourself so you can teach yourself the balance you need without beating yourself up.
PRESSURE! You pressure yourself about so much. Worry, fear. People with TMS do this. What if you go away and have the best time ever?? Did you congratulate yourself for being brave to buy the ticket and rent a house? Good for you, taking positive steps! The house was smart! It’s your landing pad to do all the events you can and a place to rest and relax. Nobody but yourself is pressuring you to do all the events. Do what you can, rest too!
This is vacation!! Journal, meditate (or sit with soft music and just breathe!), pray or do whatever you do for tms work while you are there. If you are not doing tms work, start! You are SO hard on yourself.
You are worried you interactions do not go well. That is probably in your mind only. Other other person/people are probably not judging you.. they are thinking their own thoughts. Maybe you can slowly learn to enjoy any interaction and be proud you try to do this thing that is hard for you. Begin to slowly see your accomplishments. They would make excellent journal material if other journalling is hard for you. Just list good thing or things that day, try to take your mind from focusing on the negative to seeing yourself in a new light.
I read someone who is very caring and dedicated to their partner. Who has good insight into their challenges but forgets their strengths. Someone who is very brave, facing their fears and someone who is trying to live life and step out of things that they see confined their old thought patterns.
For many months each day I listed even the tiniest good thing of my day before bed. It helped so much!

 

[Manjuno]

I wasn't even counting on such a supportive and elaborate reply. Thanks so much!

Yes, she's receiving professional care but with poor results. I'm proud of her as she's really doing everything to get better despite being depressed be the whole situation. Its difficult for me to tell myself it's their job to help her though. After years of visiting countless medical professionals I have about zero trust in their abilities. Not only were they unable to diagnose me (which would be understandable as they never even heard of TMS), but they misdiagnosed me several times causing another layer of complications to the whole diagnosis process and introducing me to medicines and methods that couldn't possible help me. But mostly they just shrugged and told me there's nothing they can do and that they've never seen such a case.

But I didn't really want to complain in this reply. A few days ago I began meditating every morning. This is how I begin my days and now I know how I'm going to finish them - by listing every good thing I can be thankful for.

 

[Cactusflower]

Almost everyone here was misdiagnosed and went though a lot to get here.
And your partner now suffers.
This is a great place to explore emotions! It took me awhile to get over my anger at some people. Feel pissed off!! Then realize those folks just aren’t educated in tms. But allow yourself to feel this anger, frustration etc. The important thing is to face your resentments, they are understandable, but hanging on to them hurts only only you. Patience and understanding towards your thoughts and feelings goes far! Also have compassion for both of you with your partners struggles. You don’t have to be the “strong” one - you can just do it together. Cry together, scream together, laugh together, love together. Being “there” isn’t being “strong” it’s just with. Nothing more. It really takes the pressure off!

 

[Manjuno]

For the last two days I've been reading extensively about TMS (AOS), journalling, reflecting on my life and mental state and discussing my findings with my partner. And this is what happened today:

I woke up after 9 hours sleep (nowadays I never sleep that long, as my anxiety wakes me up early), quite rested and... pain-free. It lasted for about 2-3 minutes and then I felt like a co-pilot on a plane - I watched as my brain was turning on all the systems, one by one:

- pelvis pain - check
- neck pain - chceck
- back pain - check
- tightness in the intestines - check
- general morning anxiety - check

It was a weird experience. I always thought that the morning pains carry on from the night but what if... they appear as soon as I wake up and they simply lagged today? Then I went on with my morning meditation and talking to my subconsious mind. My mind attacked me with strong anxiety but somehow I didn't care so much because I countered it with this feeling that somehow everything's gonna be fine and it's just temporary.

I really feel like I'm seeing my mind's game through. Yesterday I caught it generating pain on the wrong side of my back - this particular pain was always postitioned on the left and suddenly it emerged on the right side. This seems like a blunder of my subcounciousness.

I don't know. Sometimes I feel like it all comes together and I can see all this intricate system clearly but how do I know it's not another trick? I mean, if my mind is fooling me all the time, how can I be sure that anything I feel is true? What if it's like Inception: you think you got to the bottom of the matter but then another layer appears and it turns out it was all an illusion too? I don't know if I'm making sense here but I guess what I want to say is that when some realization comes to me, how do I know if it's the true one and not another thought mischievously placed there by my subcounciousness to further lead me astray?

 

[Cactusflower]

@Manjuno
I know what you mean. I feel like I get one step ahead and then step back. Hyper-vigilance. It’s so ingrained. Lasg night I re-read Dani’s My TMS Journey which is excellently written. She has a “roadmap” of her recovery and discusses that constant hyper vigilance and checking in.
I do it every morning!
I wake up feeling fairly relaxed (as relaxed as I remember being) and then I start with symptom check -I start thinking! Too much in my head!
Yesterday I decided this is simply a sign. A sign I need to continue to assist my nervous system to rest/digest but also to get back to dealing with the emotional stuff.

“Thinking” you are getting to the bottom of another matter is just that. Thinking, intellectualizing and not feeling - getting into your body. I think your brain is still resisting doing the emotional work. Be kind to yourself about that notion.
It is SCARY for your brain, it’s worked hard protecting you from the emotional stuff it thinks could “harm” you. This can also take time to sink in.
Time and patience, re-directing your mind to your body but not to your symptoms.. to the OTHER mind body stuff: a tight throat when maybe sad. A knotted ball in stomach or a hot head when angry.. those are the things we need to begin to feel. Slowly, with patience. It’s getting out of your head.

 

[Manjuno]

I think your brain is still resisting doing the emotional work

I'm starting to think my autistic brain has absolutely no idea how to do the work. It may not be about resisting but about proficiency in understanding emotions. When I think of my emotions, it's not like I'm afraid of them. I'm simply traversing an unknown land here. My mind is not only saying "be afraid!". It also says: "Emotions? What sorcery is this?". I'm afraid the books on TMS are not written with autistic people in mind, at least I find many passages that simply don't cover my type of mental structure. I'm a type of guy who, when being yelled at, needs to process the situation for about 5 minutes before deciding if I'm supposed to yell back or not.

All this may be the reason why despite me being convinced and determined I just can't make progress. I don't know how. I read the instructions to "feel the emotions", "let them come out", "stop suppressing them", "focus on them instead of on the body" like it's supposed to be some intuitive process. For me it isn't. I don't have that particular skill to interact with my emotions the way I see it described in the books and on the forum. I'm intellectualizing because that's what I 've been doing my whole life, every second of it - that's the way I deal with life. Then again, maybe I'm getting this wrong. Maybe the process of getting in touch with emotions is difficult for everyone and I'm looking for excuses? I just feel that journalling, meditating etc. doesn't do the trick for me. I force myself to it every day but I find introspection and discussing the mental inticacies with people more insightful.

 

[Manjuno]

It's been three months now so I'm reporting in.

Still no further progress to speak of. The only thing that has changed since I began is development of more symptoms and a slight reduction of overall pain level. So more but less intense. Newest additions are constant intestinal discomfort and both wrists pain. I have difficulties using pen now as my wrist starts hurting really bad after just a few minutes of writing (thinking of the times when I was writing for hours everyday at school and no pain ever set in). Oh, and today my legs almost collapsed under me when I stood up - they felt so weak that for a minute or two I could barely stand. This, I think, is the single most depressing thing: remebering the times when there was no pain, where I could walk for hours comfortably, when I could sit in any position, when I could enjoy a vacation abroad, when I could plan activities without considering the pain factor. When I could go for a trip with my girlfriend, do some silly things and just laugh and be happy.

We don't do that anymore. Now it's all about trying to get through the day and do the bare minimum: do our jobs, cook or get something to eat, feed the cat etc. There were times when I was worrying we are laughing too loudly and the neighbours will become agitated. Not an issue anymore. Sometimes we barely even talk because we are so exhausted with the pain. Talking about anything else feels like discussing weather when a bear is gnawing at your leg.

At this point my general practitioner (a really great doctor that saved the life of my family member), who knows my case inside out, pretty much just ignores my reports of new symptoms and doesn't even order any tests as he's convinced there's nothing wrong with my body. He's unfamililar with TMS but he believes my problems arise form stress/emotions/traumas. The thing is, he suggests the medication route - trying some drugs aimed at psychosomatic pains. If nothing else, just to see if the body will react to it. I'm not sure if it doesn't contradict the TMS approach and I'm generally not a fan of psychiatric drugs so I still hesitate (for many weeks now).

I decided to go the the big event I mentioned earlier and it was fantastic. I participated in some fun activities, met interesting people, got hooked up on some new things and ideas. Alas, the pain didn't let go even for a second. It was always there and I had to force myself to do anything despite the pain. It began with a headache, then the pelvic pain, the shoulder pain, back pain, intestinal pain - it just kept shuffling. And I just couldn't get over the fact that it could have been so great if only I could focus on it entirely and not on my suffering.

So here I am: meditating every day, journalling, reading books, still staying away from medical approach, not visiting physical therapists etc., not taking antidepressants that were prescribed to me, running 5-10k a day, continuing with my hobbies. And still the pain sits there, drinks a cocktail and enjoys my struggles. Still far away from getting into the Success Stories subsection.

 

[Cactusflower]

Dear @Manjuno
I want to congratulate you going for your trip. Have you done that for yourself? Recognized how awesomely brave you were to fight that fear. You were SUCCESSFUL! I am proud of you.
Did you journal about how you feel about you doing this?
The wrists; ah. Other people have reported wrist pain upon journalling. Remember most tightness is simply tension. Is your mind protecting you from the writing? Or is your had trying hard to say what you want to express.
perhaps to look at your hand with gratefulness for it helping you, is a way to move forward.
Mindset is so key. Sure we all want to get well and do the things, but we also need to step out and see the tiny shifts just like you mentioned: more symptoms -less intensity. You choose the mindset in which you view these shifts. Great thing is, you are in control and can always change your mind and mindset.
Be sure that you are not alone, all of us on this path face these struggles and victories.

 

[Manjuno]

I might have done it not so much out of bravery but from fear of me beating myself up later that I didn't do it. I would probably start telling myself something along the lines of "You were not able to go so you are basically disabled, unable to participate in anything". That thought would be devastating. So it was more of a negative encouragement instead of a positive motivation, I think. This is how I work, come to think of it. Punishing myself for failing rather than rewarding myself for doing well. It comes with the perfectionism, I guess.

But more than anything, I just desperately need to feel that I can do things. That I'm able to do anything even if it hurts so much.

 

[Manjuno]

Today I just feel the need to express anger toward all the people on the forums writing things like:
- after just two weeks of TMS approach my pain went down by 50%
- immediatelly after reading THE book, most of my symptoms vanished
- when I get a flare-up, I simply talk to my mind and after 5 minutes the pain's gone!

I see so much of this in the Success Stories forum and yet for me this sounds like a total sci-fi. I've experienced nothing like it and it seems more like an everyday struggle with the rewards being: 10-20% less pain for a week. Or an hour or two without pain when I'm doing something absorbing etc. No effortless gains. No moments of epiphany. No miraculous recovery. No amount of speking to my mind or repeating myself "it's just a trick of your mind" has ever alleviated even a portion of my pain.

Of course on a rational level I'm happy for all these people because they got a breakthrough they needed so much. Yet on a purely emotional level I'm mad whenever I'm reading the stories. It's like: my whole life I've been dealing with some issues that other people didn't have to and when I've finally found a group of individuals who suffer a similar thing, again I feel like I'm handicapped here as I can't make that progress they write about in the numerous success stories. It seems like wherever I go, I'm the odd one out.

Sorry for the complain-post. I think I just needed to get this out of my system. I'm not really angry at anyone in particular. You probably know what I mean.

 

[Manjuno]

I'm back from a vacation trip and it basically amplified all my ailments. I was secretly hoping it will do me good and let me forget about the constant cycle of pain. It kind of did in the first few days but the last days were terrible: I was so stiff in the morning, I could barely move. And the pain pretty much dictated everything I was doing. Now I need a vacation after the vacation. A few days have passed and I'm still feeling at my worst. That's a huge letdown because I was actually convinced that doing fun things and changing the environment does help (it did during my last vacation). On the positive note, I did go and drove for 5 hours straight and it was reassuring that I'm able to spend that much time behind the wheel without intense pain. The whole trip also let me realize that I'm unable to rest as in "lie down on the beach and watch the sea". I need to set goals, be active, do something productive all the time. Simply relaxing becomes a torture after an hour of so.

 

[Manjuno]

An early Autumn update:

I'm no better despite starting a regular psychotherapy, being active physically (got another medal for running) and socially; trying to do everything normally. It all seems like steps in a good direction but still some key component of the solution seems to be missing.

I'm moving to a higher-standard apartament in a few weeks and doing quite well in my job and I'm simply sad I 'm unable to be happy about it all because of the constant pain. I'm missing out on happiness in my life. For years now.

I've realized an interesting thing though: when I'm working, my mind is doing everything to distract me. It keeps telling me to check Facebook, check my mail every 2-3 minutes, read about something on Wikipedia or run some game for 5 minutes which often turns into an hour. When I'm resisting and still doing work, it turns up the pain level until it's so unbearable, I have to get up and take a break. When I distract myself with something, the pain level goes down radically. It doesn't really make sense as I actually like my job and working on my projects doesn't feel like a negative thing but there's that voice in my head that constantly tells me to stop working. I think there's something to it. There's a kind of fear involved. A fear of doing something imperfectly, of making a mistake, of encountering an obstacle, a difficult problem at work. Simply put, my mind seems to be constantly afraid I'm gonna do something wrong at work and it wants to prevent that by making me not work at all. That's one strange mechanism but I think it mqay be true for everything in my life. An overwhelming fear of doing anything because I might fail. It took me 3 weeks to send a PM to a forum member whom I wanted to ask a question or two. This may be "my thing" and not really something directly TMS-related but I believe it correlates with TMS somehow.

 

[JanAtheCPA]

There's a kind of fear involved. A fear of doing something imperfectly, of making a mistake, of encountering an obstacle, a difficult problem at work. Simply put, my mind seems to be constantly afraid I'm gonna do something wrong at work and it wants to prevent that by making me not work at all. That's one strange mechanism but I think it mqay be true for everything in my life. An overwhelming fear of doing anything because I might fail. It took me 3 weeks to send a PM to a forum member whom I wanted to ask a question or two. This may be "my thing" and not really something directly TMS-related but I believe it correlates with TMS somehow.

In my opinion? And personal experience? This is 100% TMS-related.

It's one of my biggest blocks, even in retirement, I'm sorry to say. I only work well and consistently when I'm up against a deadline (the volunteer work I do with my condominium association has monthly and annual deadlines) and then of course I'm working under stress and I'm not being mindful of my physical and mental tension, then I get symptoms (mostly gastro). And when a big deadline has passed (our biggest annual one just did) I'm at loose ends, unable to get back to the dozens of chores that need doing because I don't know where to start and I want to do them perfectly...

This is life, my friend. All I can say is: breathe, have self-compassion, and breathe some more.

Yours in solidarity,

~Jan