9.17.2014

Frustration Tolerance at Zero.

I'm sort of losing any type of coping and managing skills or tools or any type of self-soothing techniques- anything you want to call whatever we manage to come up with to deal with the stupidity of the rest of the universe.

I have health issues which are not getting better. I'm still hanging onto the idea that they will. But believing that, and having other people tell me that, doesn't really help. At this point, it really just does not do much beyond make me realize that offing myself would be pretty illogical. It does not actually help me to cope in the moment all that much now. It used to, but the power of "this too shall pass" is really waning.

And it's getting more difficult to explain to my specialists what else is being affected. I'm... breaking down because I'm breaking down. The fact that I'm in pain 24/7 and it's starting to break me [though I tend to have a pretty high tolerance for pain] is making it so I have very little ability to tolerate nearly anything that is stimulating beyond what I normally expect. I'd eventually been able to figure out how to cope with or tolerate unexpected things, environmental and stimulatory discomfort to some degree for a certain period of time, expend a bit more energy to converse with people, be able to process and understand my environment more.

At this point, everything is just screwed. I have more and more problems talking and I just can't brush it off as "I'm tired" anymore. I'll try to start saying something and it's like I check out for a bit and i'm not sure what is going on with the sentence. Or I just can't continue half way through. I feel like verbally I only have access to half my vocabulary half the time. 

Auditory processing is just sucking way more than it ever has.

My startle reflex is absurd. 

I feel like I just have zero tolerance for frustration and this is the biggest thing. I have worked so much on figuring out how to not just flip the hell out at everything when encountering frustration or discomfort or the unexpected. I feel like I'm regressing to being a child and it's so so so upsetting. I can't find anyway to comfort myself and I'm also upset that there are so few people I can find comfort in dealing with this particular issue because not a lot of people understand. 

"just calm down". It's really akin to saying "just stop being conscious".

It takes so much effort to "just calm down". I can feel myself physically straining to do so. I recently threw up because I was struggling not to just flip out visibly because my computer was "being slow". If you flip out over something like that, no one is tolerant. 

...for reference, when I was younger, I didn't have "tantrums". I really think I went full on Chernobyl because I was legitimately upset [not because I was trying to manipulate a situation] and would do so until I passed out. This is what I remember.

That struggle has not gone away. The amount of frustration and the actual difficulty and inner response and turmoil I encounter due to environment and external situations has not actually improved. However, until relatively recently how I've been able to deal with the inner response, the inner turmoil, had

If you are struggling to not flip out as an adult, no one is supportive of you being upset and trying to manage how you are dealing with that upset- they don't have to understand it to be supportive- and very few even try to be because basically "get over it". So I got sick and got a headache because it was so overwhelming, at the age of 32, to not go all fucking Chernobyl over my computer slowing down.

I have an appointment with my rheumatologist tomorrow and it's hard to explain to her everything that is going on. Worse than that... I keep feeling like it's somehow my fault that the NSAIDS either don't work, or end up not working for long or [more likely] the pain is just getting worse so the dosages can't keep up. I'm still on prednisone and take the minimum. We tried stuff like hydroxycholorquine and I ended up just short of the ER [twice, because I wanted to give it one more go- "just incase" the first time was a fluke] from GI side effects so bad I was suffering severe dehydration.

But at the same time... it's like something SHOULD be working by now. In theory I'm "high functioning" supposedly to the point where the department of mental health won't "touch me with a ten foot pole" and I desperately need serious assistance at this point in all areas of my life.

There is a complex care team division of my health organization and I have now been referred three times over the past several months but no one will call me back. The awesomeness of this is that if I had the energy to be constantly chasing around people about my health care I wouldn't need a complex care team. *headdesk*

I feel like I am circling the drain. I need to make sure I make it to the damn appointment tomorrow, but I just keep being afraid before every appointment that I'm just going to be told "I'm not sure why you are feeling this way, it doesn't make sense"... possibly meaning there is nothing she can do, or maybe I'm blowing things out of proportion... even though we are looking to RA and lupus, because treatments for these things aren't working/are giving me really intolerable side effects. I seem to be getting worse but can't figure out why.

It becomes more complicated when I say that like, the pain in my hands, shoulders, everywhere interferes with stuff. But then she asks me if I can type, life things, etc.

Well... what do you mean by "can"?
I do those things. But they hurt. I do not do them nearly as often as I would if things didn't hurt. I do them because I have no choice. I don't live with my parents, or my boyfriend or any family members.

I can walk to the bus stop, shop at the grocery store and carry bags, make dinner and type and write out how I'm feeling... or these things can't and won't happen.

So then i don't get to appointments, I don't get food and eat it [and actually this is sometimes the case], I keep it all inside and feel even worse- like I'm going to explode. Sometimes I scream into my pillows.

I don't have a choice. But then people look at that and say I'm misrepresenting the situation.

I have no idea what I'm on about here.
I'm frustrated and afraid this is the rest of my life- um. That may, by some weird default be true... It isn't pain that is intolerable. It is THIS level of pain as a fairly constant element that is becoming intolerable. PLUS that i can't function much with it. Which means NEVER having money. Which means never eating well- which creates more problems, frustration, depression, unending medical bills. On and on and on.

At a certain point, it's like it isn't possible to just care yourself into wellness, no matter how "high functioning" other people want to classify you. That's not the reality of the situation.

This rant has been brought to you by:
FML
and
"Apparently I can't speak coherently anymore. That's a new thing. Again.".
_________________

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