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Strange Star

Ahem. So the specialist at the big university hospital special institute for mindbody medicine informed me on Thursday: "Chronic pain is very complex. It is related to the nervous system." Umm. Duh! He also informed me that I need to undertake a individualized and multi-disciplinary approach to healing. He said, "There is no silver bullet. It takes a long time." Umm. Duh. He has also signed me up for a program at the hospital AND a consult at another hospital...neither of which are covered my medical insurance.

Seriously? Really? Even with a medical diagnosis now, and a medical doctor recommending these interventions? WHY oh WHY will health insurance cover drugs and hospitalizations but not really basic pro-active health care stuff that WORKS...like massage and yoga and stress-reduction programs.

I am feeling very seriously grateful that I have an uncle who has enough money that he has offered to pay for some of my medical stuff.

Because yesterday, I came across something that seemed to work really well for me.

I did an experiment. I scheduled a 90-minute relaxation massage/reiki session with a new guy at the place I used to go (he is old and amazingly gifted). It is the first time I have ever had bodywork done that made my whole body almost feel like the pieces all fit together logically. I have no real idea what he did, but in all the work I have had done, this one was the most effective. Then, right from there I went to my therapist appointment. And it was a really, really productive appointment. We sat on the floor which was really good. Did some somatic stuff which was also really good. And I actually made some real progress...I was able to stay present inside of my body and distinguish some different physical sensations in different parts of my body, and to feel some emotions, without disappearing myself. It was scary but really, really good.

So after a really bad night, and feeling very down and discouraged in the morning, I ended up having a good day and feeling hopeful again that I maybe can really do this trauma processing stuff. Yay.

I am extraordinarily grateful to Richard Schwartz for developing Internal Family Systems Therapy, and training people like my Mr. Famous and Yoda. And to Susan McConnell for training Yoda in Somatic IFS. And to whatever forces in the universe connected me to so many healing people in my life and are letting me open up a little bit to receive that healing.

And I started a new sculpture and a new painting is planned out and I wrote another story. I am rockin' on. And I am reading a novel I like a LOT and a collection of poetry I like a LOT.

AND...I am getting to know myself well enough that instead of powering through all the stuff I want to do today because I am feeling decent (which means pain is around a 5...sigh), I am going to take a nap before we drive North this afternoon.

I am making incremental progress in actually doing some of this self-care thing. Feeling very pleased with myself.
 
"Chronic pain is very complex. It is related to the nervous system." Umm. Duh!
The doctors are used to talking to people who don't know much about this stuff. They are definitely not accustomed to someone like you, who already knows a lot and has both the curiosity and extreme capability to pursue this in detail. :)

WHY oh WHY will health insurance cover drugs and hospitalizations but not really basic pro-active health care stuff that WORKS...like massage and yoga and stress-reduction programs.
Partially because Insurance practices are antiquated. Partially because there aren't enough formal studies around "non-standard" (read "non-traditional, non-western") medical practices and methodologies for them to formulate cost estimates. If it would make them money to add these kinds of services, they'd do it in a heartbeat; but since it's just another cost to them, they're in no hurry to add these things. Until, of course, such practices start getting really popular and become things they can use to compete with other companies. :/

Sorry you're having to deal with all of this crap. None of the therapy for me, or for my kids, is covered by insurance. There are only a few therapists on my plan, none of whom are ones known or recommended by doctors I know. Even psychotherapy is barely covered on standard medical plans.

And I started a new sculpture and a new painting is planned out and I wrote another story. I am rockin' on. And I am reading a novel I like a LOT and a collection of poetry I like a LOT.
:D
 
I don't know how it is possible that I feel too busy to do the things I want and need to do. I'm not even working anymore. Other things in life just crowd in. Which makes me feel really badly that I should just go back to work because I'm still not able to rest and take care of myself. Well, I guess I am moreso than before, but still.

My poor daughter is suffering so much. It is awful to witness her flashbacks and hear her talk about herself and her nightmares and her denial of what happened...it's like looking in a mirror except it's not me, it is someone I love and I can't do a goddamned thing about it except love her and persuade her that going to a therapist is a good thing. The elections for student council were today. She ran for president. She probably will not get it because she is not in the "popular" crowd. But I wish she would. She needs something. Bleh.

Today I met with a guy who does group therapy. I liked him a lot. I have no clue whether he will consider me suitable for one of his groups. Feel like I am auditioning. Argh. We ran out of time today so he said he wants to see me again to talk more. I kind of hope it works. I have a good feeling about him.

I am not in a very good place at the moment. I have good moments, but I seem to be having more bad moments than good ones. In the big picture, I suppose this is good. Because I am feeling feelings. And it sucks. I am getting flooded regularly by parts, but am managing to prevent myself from getting sucked into the vortex. Not sure how I'm doing it, actually. I suppose some of the skills I have been working on are finally gaining some traction in my system.

I am still feeling like I probably ought to be in some sort of hospital program, but that scares me at the same time. I'm not sure I could do the locked up thing, even if it were voluntary. I think this fear is what is driving me to manage my firefighter parts. I am doing that the best I can. It is really hard. I keep up the mantra "Distress Tolerance." I keep telling myself I am here, and safe. But my parts don't believe me. So, walking the tightrope over the annihilative vortex, as usual.

I am liking doing my sculpture stuff. My husband says they are hard to look at but that maybe people who don't know me would really like them. For him, there is too much sadness and pain. Bummer. I haven't shown them to anyone else yet. But I am continuing with them. A good mindful and creative outlet. Better to put the sadness and pain into stones and wood and wire than onto my own body.

I am feeling very badly that I have not spent much time reading other people's posts on the forum. Ever since the forum layout changed, I can't quite manage to get the overview I used to. And I haven't managed to hunt through and search people's diaries for which I don't get alerts. Which bums me out. I need to get more proactive and find out what's going on with my forum friends.

I am writing here, now, because I am trying not to get sucked into the vortex. Not sure what else to do. Argh. Husband just arrived home, so I will pop off and talk to him before I go to sleep. Daughter is tucked into the sitting room next to our bedroom. She did not want to go to sleep in her room because she is getting those freezing nightmares where you can't speak or move. I remember those. They are horrid. I wish I had a magic wand to wave over her.

Sigh.
 
None of the therapy for me, or for my kids, is covered by insurance. There are only a few therapists on my plan, none of whom are ones known or recommended by doctors I know. Even psychotherapy is barely covered on standard medical plans.
Ugh! Now I feel lucky. Our health insurance costs a bloody fortune, but they have been pretty generous about coverage. They don't pay for Mr. Famous, but so far, they do therapists for all four of us.
 
I have been having a VERY scrambly few days. I don't quite know what is going on. Either it is that the prozac is wearing off (I don't think this is it), or that as I am practicing NOT dissociating as much as I am able, then things get wiggier and wiggier. I am wildly anxious. I had what I think was a manic episode yesterday. I have been working very, very hard to NOT cut off all my hair, cut up my arms and face, or let my inside parts wreak all sorts of violent havoc. It is pretty ugly. I don't know why. Is it backlash because I have been working on art? Is it freak-out because I have not been able to make myself go to visit my mother? Is it that I am sleeping so badly? (If I am in bed 8 hours, I average 2.5-4 of sleep according to my little fitbit device). WTF.

Today I started researching thyroid dysfunction. Lo and behold...the symptoms of hypothyroid and fibromyalgia are almost the same. My doctor (who claimed for years that I did NOT have chronic fatigue or fibromyalgia) has been testing me for thyroid dysfunction and Lyme Disease for ages. It always comes back normal, but I have almost all of the symptoms.

Well sht. If this is one of the problems behind the pain and fatigue and bloat and cold and dry skin and weight gain and depression and etc. I'll be THRILLED for a quick fix. And I will be PISSED at my intern and the rheumatologists and everybody who missed it.

AAAGH.

I mean, I know this is not the answer to resolving all the trauma shit that has hit the fan. But if I could get something to help with the pain and exhaustion and overwhelm...I think I might just have the energy to do a bit more trauma processing. Maybe it would feel safer to be inside my body. Sigh.

I have emailed Mr. Famous, my internist, and my rheumatologist. I need to figure something out. Because I am not doing well in many ways. I keep hanging on to the things that ARE going well (the writing, the art, the occasional unblending from parts, etc.) but when I step back a bit I can see that I am still pretty f-d up. Too many voices, flashbacks, body weirdnesses, nightmares, memory issues, space outs, body hijacks etc. My intellectual part is just fine. It is convinced that it is ME. The whole me. But now that I am getting a bit in tune with some other parts...I begin to see why I am freaking people who love me out. I am rather a mess. A mess with lots of hope and potential, but a mess who really, really, really needs more help sorting myself out.

I want a full endocrine workup.
I want to go away somewhere safe and sleep as much as I want.
I want to do art therapy.
I want to do equine therapy.
I want to do authentic movement.
I want a good gentle massage every other day.
I want cranial-sacral every other day.
I want my good friends to hug me and help take care of me.
I want Merlin to wave his magic wand over me and make me feel strong and brave and connected and energetic.

AAAGH. I am so sad and frustrated and wiggy all at the same time. I hate this.
 
:hug::hug::hug:
I'm sorry to hear you are feeling so lousy. :(:cry::sour:

I'm not Merlin, but I have a magic sparkly wand and I'm waving it for you. May you get some relief very soon.

p.s. I tagged you on another thread asking for help explaining something... then read your latest post here. Sorry! No pressure at all my friend.
 
@sun seeker and @gizmo thanks for your thoughts. And Sun, keep waving that wand. I'll do it for you too. Maybe our wands got switched on us somehow and yours will work for me, and mine for you?

Maybe all of this upset is that I am beginning to come into what's called "realization" and even some "personalization." It kind of sucks. But I know I need to deal with all this if I am ever to become a whole person who can live without trying so goddamned hard all the time. I have these lovely moments when I don't have to and it is all just wonderful. I want more of those! I had one this morning when I went to breakfast with a trusted friend who I haven't seen for a while. It was a lovely time, for both of us I think. I could be as wiggy and fragmented as I wanted and he STILL wanted to talk with me. And vice-versa. It is very nice to not have to hide from people all the time and try to be so "normal" all the time.

People on this board have said that the only way out is through. And that things can get worse before they get better. I am reminding myself of this. I feel pretty much stripped out of my whole identity these days. My SELF still doesn't live inside my body much, but I have moments and I am working on creating more of these moments. To live inside myself instead of off in the stratosphere somewhere. It is very hard. A long time ago, a forum friend told me that I seem to be processing things backwards. I think she was right. Increasingly, I see this. It is extraordinarily odd.

I begin to understand more why some articles about dissociation note that when people begin to integrate they need a lot more support. I most definitely need something else because I am so very tired of fighting off all these parts that want to flood me. I do try to talk with them as best I can. "Be with them not in them" as Yoda tells me. But I am not so good at it. I just can't stay grounded for more than a few minutes no matter how hard I work at it.

Yesterday after my daughter had an intro EMDR session, I was invited back into the room. The therapist was happy to show me the equipment she uses. It is totally cool. It makes me think that perhaps this might be helpful for me--she uses this machine that kind of vibrates in each hand (bilateral stimulation). If she had just explained it to me, I think I may have rolled my eyes and written it off. However, the experience of holding the things in my hands was quite powerful. It may be just the ticket. Because it was physical contact with the here and now. I KNOW I need physical contact outside of myself to stay grounded. I cannot do it all by myself. There is something seriously wrong with my brain that prevents this. And, of course, no therapists are very comfortable with much physical contact, so it's tough. But this...the EMDR things...was kind of like a substitute. I am intrigued. But scared too. Because I know you have to be able to stay grounded for it to not re-traumatize you.

Here's what I want. I want to go to some healing place that has all sorts of modalities for healing and people who listen and connect and aren't afraid to be authentically human. I want them to talk to me about what they see when they talk to me and observe me. I want to try a bunch of different approaches to help me get inside of my body, believe that I am me, accept that I have wildly polarized parts most of whom do not know each other, and and and.

I know there is no magic wand. I get that. But there's got to be something I can do to nudge this healing process along. I am very, very tired of living like this. And I don't want to be tired. I have a lot I want to do and see and be. I need to get unfrozen from the fear that goes way way back. I need to get my energy back inside of me. I want to be one whole regular person who can live and love and laugh without having a constant backlash. I hate living like this. And it gets worse and worse the more that I am aware that most people don't have to live like this. That most people have no f-ing clue what it is like to have a whole city of warring factions vying for control over one body in this space and time. I am tired of feeling like I am going to explode. Not with anger. Usually people talk about exploding with anger. It's not that. I am going to explode with too many simultaneous voices and expectations and judgments and doubts and fears and and and all at the same time.

Mr. Famous asks, "Who is in the driver's seat?" I don't f-ing know. No clue. It changes from moment to moment. It is driving me mad. And I cannot go back to being in the part that ran most of my life. Can't do it. It's like drinking a fine wine and then having to return to plonk. I have had the experience--however fleeting--of feeling whole and in self. I love it. I want it. And I cannot seem to manage it. It comes randomly. I want to be able to make it come all the time. Or more of the time, at least.

I've hardly ever been envious or jealous of anyone (except people who own a cabin by the sea), but I am envious of people who can live their lives as one person in the present. Even if they have parts. We all have parts. But there are people who are in SELF most of the time. I want to be like that. I don't want to live the way I am living right now. So I definitely have parts that want to die. But I also have parts that want to live, and live whole. Live, laugh, and love. And create too. That's all. I don't much care about anything else. Because if I can do those things, then I will have the energy to do lots of other things that matter to me as well--and do them out of love and joy, not out of fear and shame and obligation. Those are what sap me.

Okay. Need to attempt bed. But after multiple days with hideous sleeping issues, I'm dreading it. Which doesn't help. Ugh. Ugh. Ugh.

One bonus...for all my crazy talking to parts and hearing them talk to me...my most difficult to handle part (a kind of combination protector/firefighter part) actually shared something with me last night about my mother and it's relationship with my mother that still has me reeling. I will need to talk about this with Yoda tomorrow. Not sure what to do with all this.

What they call co-consciousness is really really sucky and terrifying. But I can do it if I can keep up the hope that maybe I can manage all these parts with intentionality instead of being managed by them. I am reminding myself that this can happen. If I keep working and believing and using strategies to remind myself...
 
Maybe all of this upset is that I am beginning to come into what's called "realization" and even some "personalization." It kind of sucks.
I think I know what you mean. Being present isn't always all it's cracked up to be. Sometimes the present is not much fun.

And Sun, keep waving that wand.
You bet.

I could be as wiggy and fragmented as I wanted and he STILL wanted to talk with me.
That sounds like a very good kind of friend to have.

I feel pretty much stripped out of my whole identity these days.
You too?! We could form a club. There was a thread a few of us responded to recently, I'll see if I can find it for you. We were hypothesizing about what is happening when you lose a sense of who you are. Each of us had a somewhat different experience of it.

I hate that it has to get worse before it gets better. I suppose the good thing is we've already gone through or are going through the "worse" part.

I am going to explode with too many simultaneous voices and expectations and judgments and doubts and fears and and and all at the same time.
I can relate to this, too. It makes me freeze because I can't act on everything at once. I call it "having too many little people inside me at once." What does your body do when it feels this way? I wonder, is it connected at all to your pain?

But after multiple days with hideous sleeping issues, I'm dreading it.
Are you taking any medication for sleep?

Not sleeping is awful. You have my deepest sympathy.

It sounds like some things are really shifting for you... which at the moment doesn't feel so good, but there is movement there. May things continue moving towards healing for you.
 
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That sounds like a very good kind of friend to have.
Yes. Very. Happens that he is a developmental psychologist. And has his own pretty intense traumatic back story. So he is...attuned...shall we say. He is a good guy. And much happier these days than last spring, so it was great to see that. I am lucky to have such a friend. And he and his wife are friends with my husband and me as well, so that makes it even nicer.

It makes me freeze because I can't act on everything at once. I call it "having too many little people inside me at once." What does your body do when it feels this way? I wonder, is it connected at all to your pain?
YES...too may people vying for control all at one time. Mine aren't all little. In fact most of them aren't. I have issues with my protector parts more than my exile parts. What does my body do...hmmm. Lots of answers. Sometimes I freeze in that hideous sort of state where your mind is going 1000 mph but your body cannot move at all. Sometimes I space out completely. Sitting on bathroom floors or in stairwells or in the car or at my desk...anywhere from 5 minutes to 2 hours. Have no idea what happens during that time really. Not asleep...just kind of in limbo. Sometimes I crawl in bed and sleep. Or I meditate in hopes that I can relax and slow the thinking. Sometimes I rip up my arms. Sometimes I scratch and bruise myself. Sometimes I get hyperfocused on some project or another and will not be able to come out of it until I either collapse or the state I'm in naturally passes. YES all this is connected to the pain. My "parts" live in different parts of my body. Stress of any sort (good or bad) riles everything up, and my body just shuts it all down. Or something like that. I am truly hoping to solve at least this much.

Are you taking any medication for sleep?
No. I have tried lots of different things, but I have a love/hate relationship with meds. Right now, I am off all meds to see what happens. When I was on nortriptyline, I think I fell asleep more easily but it was still not a restful sleep. Neurontin...same deal. Although that didn't really make me sleepy. Visteril zonks me out within about 30-40 minutes but wears off in a few hours. I've tried melatonin and valerian and calms forte. Same thing for all of them although the zonking out isn't quite as effective. Ativan is okay in really small doses. But really, my sleep sucks. I have been wearing a fitbit for a couple of months to check my own perceptions against reality. Turns out the reality is far worse than my perceptions. Last night in bed almost 8 hours; slept 2.3 hours. No wonder I am so screwed up.

May things continue moving towards healing for you.
Thank you. And you too.
 

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