keep on keeping on

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

We second this. Sending good thoughts and hope.

MDs

I quit the pain prevention meds, just to see if they are even doing anything for us.
and from what I see, they don't. we talk to the GP on tuesday and I really don't know what to discuss.
I think the pain comes from being too tense and if I can just stop being myself we would be great.

I am very stuck with the shame/self-condemnation thoughts today. it happens every time I realize that my brain doesn't work how it is supposed to and that its kind of aspergers and whatever I say is wrong for the social situation.

like can anyone explain to me, when people ask for help, when do they want to have a solution to their problem and when they they just want sympathy? I don't get it. I keep messing that one up almost every time. I keep thinking when they say they want help they must want a solution. but the more I try to help the more they tell me they are really fine, they just wanted help. WTF
I am not helping anyone.
I want to leave all social media and never say a word again. I am insanely unhappy with who I am.
and this life.

Hi Asti,

First we just wanted to acknowledge your feelings and let you know that we're sorry you're struggling with all of this. The one thought that we have might at least help with one thing you mentioned.

It frustrates us too when people don't say what they mean. Sometimes they don't even know what they mean or know how to ask for it. Some of us can be perfectionists and think that other people Should (capital letter intended) do everything perfectly as well. For us the best solution has been to work on accepting that since nobody's perfect, we need to ask them more precise questions.

So someone reaches out to you for something, and you're not clear whether they want solutions or sympathy. Ask them. "What do you need from me right now? Do you need a solution, or do you just need me to listen and empathize?" It may seem unnatural at first, but even the fact that you're asking them to clarify shows that you're interested and offers them options that they may not have known that they had.

We hope that this is helpful to you. And we care.

MDs

I think that I must have gotten triggered somehow somewhere and I don't even know how because the whole day is just $#%^

thanks for anwsering MDs

Hi Asti,

You do help us.
We care about you too.

Sarah

Sorry you're having a bad day, Asti.

birdsong87 wrote:like can anyone explain to me, when people ask for help, when do they want to have a solution to their problem and when they they just want sympathy? I don't get it. I keep messing that one up almost every time. I keep thinking when they say they want help they must want a solution. but the more I try to help the more they tell me they are really fine, they just wanted help. WTF
I am not helping anyone.
I want to leave all social media and never say a word again. I am insanely unhappy with who I am.
and this life.

You help us a lot on here, that's for sure. I agree with MDs that you can ask. I also don't think you can go wrong to start by empathizing. Then if they want a solution, they'll ask. But I make the same mistake a lot of trying to help someone solve a problem when they don't really want that kind of help.

thanks for the support guys.
yesterday was kind of rough for her.
I think it was because someone asked for help and when she asked questions and offered solutions the person suddenly dropped their needy Little on her. not saying it but kind of implying that A. should just meet the need because they can't be bothered to do it right.
even on this forum we are rarely in for littles/adult cross-system conversations and we don't 'work' with other peoples Littles to solve system problems. you don't push your outside child on a stranger and tell them to feed it.

I think that another part of the problem might be that she quit the lyrica so suddenly. it might suppress hyperarousal and she was in a clear fight state and didn't know which direction to go with it (mostly attacking herself) and even when we got it down for some time it just came back.

we had an unexpected plot twist last night.
because we couldn't sleep til very late because of the obvious hyperarousal she took half of a lorazepam. and the freaking facial pain vanished for the first time since summer started. the pressure is slowly building up again today, but this was the most effective (and unexpected) break we got from it in like... ever. even the pain killers leave us with pressure in the face.
so benzos are obviously no answer to the problem, but maybe this can give us a hint what is really wrong and maybe show how else to approach it.

Hi L,

Glad you guys are doing better. Glad that the Ativan/Lorazepam helped, but yeah, it's a good idea to be cautious when using benzos. We won't take them anymore.

We also agree with what you said about littles being the responsibility of the adults in their system, and not of outside (other-bodied) adults.

Did you quit the Lyrica completely, or are you just lowering the dose? Sorry for not remembering if you mentioned this earlier.

MDs

we've been learning about what they call 'pain gates' in the pain (stem), science believes there are two and benzos are known to have an influence on the first one (in rats) so the phenomenon is not entirely new, there is just not enough science about it yet. I just hope that there are other ways to intervene in that place that are not benzos...

we've stepped up the lyrica game from 1x 75mg to 3x75mg and once even 4x. but it only made us feel drunk. it never really did a lot to keep the pain from coming. so after 2 weeks of 225mg a day we quit it entirely.
this is our second day without. I don't feel a difference at all. just no drunken feelings.
we carefully use relaxation exercises and try to learn stress management exercises to go with it. and keep it at the same level as we had with the lyrica, pressure in the face but no further outbreak of more severe pain.
right now the most promising thing seems to be to relax the facial muscles regularly so we don't build up tension in the face.
I am satisfied so far. even with no new meds we might figure this out if we find the right exercises.

Hi,

Sometimes I think if I was just a lab rat then all the meds would work a lot better.

Iain