keep on keeping on

Hi L,

I'm glad you're planning to pursue more effective treatment--you shouldn't have to tolerate what you've been going through.

It does sound traumatizing to have pain so bad it makes you cry and then have the crying make it worse. It's like being punished for crying, so maybe it triggered something from your past also? (Although it sounds bad enough all by itself.)

I'm glad Asti and Annett are helping you out.

thanks friends. it means the world to me to have your support.
the temperature actually dropped to 70-75°F last week and this week and with some luck the next week too. super unusual. everyone is talking about early autumn, but I don't trust that.
the thing is, once the nerve is so raw, it gets triggered more easily, even without heat. just the daily stress is doing the job.
I am now on 3x75mg Lyrica and it seems like the body is slowly getting used to it and doesn't feel super drunk all the time. hope to raise it to 3x100mg and see if that is enough. might be. if not, I still need the small steps to help the body get used to it.
atfer Lyrica the next option is gabapentin but I've heard of gruesome side effects so maybe I will stick to trying this.
might also have to see a neurologist for the nerve it self. might include another MRI to diagnose the kind of TN...
we will get there.

I will talk to the T today, about me. cause I just can't go on. the worst of the worst was that I felt so alone in all of it. like I will always be alone with my pain. trauma pattern.

after Thamara shared all her frustration about our upbringing, family and Age she went into hiding. probably from the pain. and it dawns on me that she might be scared of Age because of her memories.
there is a direct link of excuciating facial pain and trauma stuff Age remembers. all her stuff is gruesome. I am pretty sure that gets triggered as well. Age herself seems solid and unburdened but then she was trained not to flinch. so I really don't know where she is at.

it wasn't until I went for a walk in the park yesterday, seeing kids play, dogs poop, the little creek... that I realized that there had been something traumatizing happening. I recognized the feeling of sitting in nature, detached.

I hope to get more clarity with the T today. the insurance might not pay for sessions til mid september because of paper work taking time. I might pay her from the funds we raised. cause I can't stay alone.
and while pain is the main goal Asti worked on some stuff for the organization where we can apply for funds for the SE and other stuff. it takes a while, they get so many applications, but then...
Asti found out that they are paying for interventions for self-help, can't remember how it is phrased, but there is this house just a few hour drive away, they usually train trauma therapists, but they do offer weekend seminars for patients every once in a while. that could be paid thru the help organization. Asti said it matches something in the application. that could be a weekend vacation for me. they have dogs and alpakas. and it sounds really nice. the leader of the project once held a seminar about DID in my hometown.
I emailed them to check if I would qualify for a seminar autumn next year. I so long for a change in our routine.

Im so glad you can see you T today. Hope she can help you a little with all thats going on and that the insurance stuff will work out soon so you can keep going. You shouldnt have to be and do this alone!
The house and seminar thing with animals sounds really nice and peacefull!

the people from the seminar thing wrote back that there are still open places in the one they do this year, in october. I wish it wasn't so expensive as a whole. like... the seminar has moderate prices for that kind of stuff with a LOT of trauma specialists helping. but then there is food and renting a room and the freakishly expensive train and nobody who could drive me there... sums up to just over 700$
guess who is poor
without the application for the fund it can never work out. so maybe next year...

saw the T today, made a plan. she gave me contact info for 2 different pain therapists. this is a thing here, they are doctors who specialized on the holistic view of pain and don't 'just' know the medical stuff or the psychological but treat it all. they also understand trauma and dissociation.
she also gave us a book to read that has small exercises that we can do together.
and helped us to make an emergency plan for pain situations. like what to do on the outside and on the inside.
we will focus a lot more on us for a while. skrew blog writing and textbooks. this is serious $#%^ we need to manage.

she also said that with everything... we are basically ready to start trauma processing.
the T rang the phase 2 bell.
as soon as we got the pain stuff figured out. we won't get more stable than this.

If they still have open spaces, inquire about scholarships or financial assistance. Often organizations have their own provisions for that, and could make it work for this year. Or perhaps the clinic you stayed at has resources for this kind of thing. Maybe you could write to your T there, and/or maybe your current T knows something about how to go for less expense. It sounds like it could be really helpful for you, and next October seems so far away.

Wow, your T continues to seem amazing to me.
I hope the book is helpful. At least it is something you can engage with Now.

I'm hoping SO hard for you guys that you can go to the event.
Is there any way to reduce the cost? Doing couch-surfing or staying in a hostel, taking a blablacar ride (or something similar), or asking if friends go anywhere close to that area and take the train from there? Or one of those Flex- or Flixbusses (can't remember what they're called)?
Taking your own food (at least for breakfast and lunch)?

Those are some ways I know to reduce costs. But they do take guts and it may not be possible because of trauma and pain (or both).

Sending gentle hugs.

the seminar is wednesday to saturday. I know nobody who could drive me. we do terrible on busses or in cars with strangers, so train is what I could imagine but it is expensive. like a third of the costs. I don't see how that could be solved.
housing is cheapest with the seminar house, all the places around it are more expensive. and too far away to walk.
the seminar house is somewhere in the country side...
they do offer discounts when people ask but basically I could only afford the room, no food, no workshops, no getting there. it is just not adding up. not with just having bought an AC.

I WILL try to get a break from stuff soon and we are planning on more system-time, more being outside and carefully moving our body to nice places. more life.
less internet, less blogging, less learning.
more quality time, mindfulness, exercise, focus on making our own nutritious food...
we've had a different standard about 2 years ago. we need more of all that again. almost like saying, not so much screen time, more family time.
the younger ones here and Annett speak against internet use almost daily now. they want us to get away from all that and to be with them more. do more life.
I think we could find a way to increase quality of life for now without a few days in the country side.I can't add stress now by trying to figure things out.

we will see the T again next week and we have plenty of homework to try til them.
Mike says he likes that the T is keeping the tension in the therapy. she realized that we will just bring the small quarrels and need someone to push a tiny bit cause we... wouldn't have the courage to ask for deeper work but we are probably ready. our last T was ok but the didn't have the same edge, things got stuck because she didn't push in the right places... (and Asti kind of disliked her...)

we will do what is before us now and plan for the other stuff.

It does always increase tension to try to make something work.
Maybe you could plan a day trip to an alpaca or other animal place for this year then. Something a bit smaller.
Or just the prospect of good fopd and more offline time. I agree that that already sounds good.
I made a list a while ago, of things/circumstances that make us feel happy, and it also included those things.

we understand the little book the T gave us about the connection of pain, body and emotion. it is super complex.
but for chronic pain it seems like a lot that helps with trauma helps with it too. maybe that is why our favorite clinic T for DID is a pain T too...
it means changes in our daily life. a serious focus on the self-care stuff. and not the bubble bath kind of self-care. I mean the eating, drinking, sleeping, exercising, resting kind of self-care. covering all aspects, including emotional self-care. have to learn what that even is...

we also have to think of the trauma connection. especially with the facial pain and Age and her gruesome memories. always grounding when in pain. and we will have to talk to the T about some stuff that is too hard to tell.
when we do our sync exercises and breathe deeply for a while we get in touch with emotions. we breathe so shallowly all the time now... it seems like it is a way of numbing or at least somehow closely connected. so we try deep breathing and there the emotions surface. awesome. that is a quick success in figuring things out early on.

main emotion is loneliness and we are pretty sure that this is partly me and our present life but severely Age and her memories. loneliness being a big factor for her aparently and she is still kind of isolated.
the T said that we should find nice things to do for/with Age and the little things we found seem to lower pain a bit. like she saw that long before we did. we are on to something here.
maybe we can manage not to get super stuck in chronic stuff when we don't just approach it as a body issue.
right now it looks like we might be able to get out of the pain trap and I hope it is not false hope...

That sounds really positive, birdsong! We hope it helps you with the pain, and with helping Age feel less isolated!