Supressing the real me.

I didn't really know if this needed a trigger icon so I figgered better to be overly cautious? i have no idea at thi spoint.

So, I get all cranky pants around here sometimes, but I try not too. Like, I really try hard. I make jokes when I feel like crap and I realize I'm getting too snippy and being a jerk. I really don't like it when I take out my bad mood on other people. I know I do it sometimes, but I don't mean to.

But like, that's not the real me- the joking and laughing at the ridiculousness that is my life. I'm not sure it's actually any kind of ridiculous. Just, if I don't call it ridiculous and suss out some kind of bizarre or maybe even slightly disturbing kind of humour, I might go insane. That's not exaggeration.

Like a really bad and dark just out and out bugnuts, crawl under a table, stop eating or drinking and turn to dust, mold over or become something equally gross and creepy and "are you afraid of the dark?"ish.

There's this really super dark and icky part of me that I manage to kind of process out slowly now and then. I stay ahead of it usually through humour and by convincing myself that whatever the HELL I am dealing with, there is a solution, and answer, I or someone I know will be able to figure it out, there is an end to this tunnel [the tunnel is just REALLY freaking long!], this is a pause in the journey, it's a challenge I need, whatever other crap I need to get through it.

But I'm kind of running out of steam.

I'm having a lot of problems just processing the reaffirmation of the epilepsy. Like, Ive had the DX. and i've KNOWN I have it, but it's kind of... the I don't know, head honcho super director of all neuro things big and tall or some crap basically reaffirmed it recently. So... I mean that's really that.

Given the progression of my rheumatological symptoms, and the very very thorough investigation my GP and rheumatologist have been doing, I don't haave any reason to doubt the conclusions from that: as of now Undifferentiated Connective Tissue Disorder. Since it's been progressing for several years already... I mean I don't want to be a downer, and neither does anyone else familiar with my health or my personal symptoms, but it seems not terribly unlikely that it will continue to progress.

uh...
The prednisone really helped. We are trying to very very slowly switch to a new medication, but i am having really extremely bad reacitons to it. Like, normally people have stomach upset and such, but even the pharmacist said how my body is reacting is excessive and if it doesn't get better, we would likely have to reconsider the treatment plan.

And I'm hurting again.

And the point is, and why I didn't put this anywhere else on the board:

I can't keep doing this.
I can't keep god damn pretending that I can just... take it.

That like... nothing is freaking wrong.

My entire life I have just presented as way better than i am.

Both psych and physical health. I'm so used to being thought of as crazy, that my physical health was always thought of as like.. not really that big of a deal.

And when I would tell people that I was having a REALLY REALLY HARD TIME, in terms of mental stability, like even when I would suck it up and take a deep breath and rehearse over and over the really painful conversation where I would have to say "things are really bad, I need help"... I would constantly get responses like:
- you are fine
-you are doing fine in classes
-you always pull through
-you look fine
-nothing is wrong with you

then inevitably I would just completely lose it, and EVERYONE ON EARTH yells at me for not telling them something is wrong.

people don't believe me because I can contain and maintain for a long time, or at least my outward expression is not at all comparable to my internal struggles.

So when i say "I need help" or "I am hurting" it's not enough proof.
I function much like a dam with a small crack or something.

And so it goes now.
I have been trying for a very very very long time to express to people around me how bad things are physically. People just haven't gotten it.

Even now, my parents get it more, but not entirely. I don't expect that people can be totally empathetic.

But i am pretty much stressed to the max.

having teh diagnoses is kind of... I feel freaked out.
The constant upheaval of the pain being gone and then back, and then the huge amount of stress on my body where I have diarrhea until I'm a bit worried I'm going to suffere dehydration, then I'm getting pain back on top of that and I didn't sleep at all last night, but a couple hours today?

I'm getting freaked out.
I'm really sad, I'm getting a bit depressed.

I was feeling positive.
I'm starting to get really worried and overwhelmed.
I don't feel like I can talk to anyone about anything

I haven't fel t well in SO LONG.
I feel like I've just worn everyone out between the crazy and the sick. I feel ike such a burden.

I just want my life back.
I feel extended almost 100%.

I don't know who I can relate to because like, if I talk to people who have chronic stuff, I feel like a lot of them aren't in a similar enough postion.
I feel like I've had chronic physical stuff since I was in my late teens, really.

I've had chronic pain and GI problems and allergy problems to some extent since then. The past yearish has just been particularly bad.

But I've been on SSDI for many years.

I'm only 31.

I've worked very hard to get the MI stuff under control.
But it's still THERE.
Like I still have these mental health issues.
They haven't just disappeared.

I still have to work, overtime at this point it feels like, to keep a hold of some kind of mental stability.

I'm worried this is slowly tipping me toward loonytown.

I don't know what I'm saying.

I'm sooooo not ok I don't even think I'm able to express it.

But I just kind of laugh about it.
Ugh.

I have no idea who to relate to or how.
Sorry this is so long. I don't know.

I'm glad you were able to express your feelings. People seem to expect us to just put on a happy face, and you're right, there comes a time when we just can't do it any more. And we really shouldn't have to.

I hope you will feel better soon.

I honestly don't know the right words to post in reply, but I want you to know that you have been heard and that I applaud you for having the courage to speak up Josie.

I really don't know the right words either. It seems such an understatement to say that is a lot to deal with. And Josie, no worries. It's not too long. I read it more than once. Wish there was something I could say to ease some of it even if but a bit for you. Please know there are good thoughts being sent your way…

I also wanted to post to let you know i read it, and i'm hoping things get better for you soon. Thinking of you

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I agree 100% with your post. I often feel like I have to hide what I'm goig through and that people don't really know the real me. I hope things will get better for you soon. I'll be thinking of you and sending positive energy your way.

Hi.
Sorry I thought I posted this like several hours before but I've been so attentionweird I think I closed the window before putting submit.

I'm not sure what to say I feel all dumb lately and just kind of spent in terms of like... trying to say what my brain is thinking.

But I wanted to say thatnk you for responding and just saying that, like you guys are listening. It's really helpful to just have that response and just that means a lot.

I'm not sure what else to say right now but it's really hard to like actually say how bad stuff is.

i post here and there about like "stuff hurts" and whatever but when it comes to the really bad deep down dark stuff, like the really morbid bad?

It's not easy for me to talk about it too often.

oh, I thought I didn't know what to say.

I'll try to check in or something, but thanks so much.

<3

josie.

You strike me as a very strong person and I admire you so much. I don't have much in the way of physical problems, but the MI is such a huge pain in the ***. I can relate to you saying that you have to just keep trying and pretending that it isn't a big deal, when it really is!

I hear you. I feel you. I send out the most positive healing and uplifting energy I can muster in my heart to you Josie and I hope for a miracle for you. That being said, just know that we acknowledge that you are a hero. I think people who don't have MI or chronic conditions can't understand that.