Frustration Tolerance at Zero.

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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 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 because not a lot of people understand. "just calm down".

It takes SO MUCH effort to just calm down, I recently threw up because I was struggling not to just flip out visibly because my computer was "being slow". But if you flip out over something like that, no one is tolerant. If you are struggling to not flip out, no one is supportive of you being upset- they don't have to understand it to be supportive, but very few are helpful or supportive or even try to be. So I got sick and got a headache.

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.".

"This too pass" never solved anything. "It gets better" never solved anything. You and your doctors will have to work out something because problems never go away by themselves. Only optimists expect problems to go away by themselves.

I'm no doctor and I have no idea what can be done about rheumatism but if you're easily startled it might help if you took an anti-psychotic like risperidone. Don't let the label put you off, anti-psychotics are not only for psychopaths. I used to take it and it helped me with some problems I had during my youth but the trouble was I continued taking it for years after the problems had abated.

You need to be honest with your health care providers and use some of what you wrote in your discussions with them. It may feel awkward and taxing, but if you keep all these thoughts to yourself, you may be missing out on vital help in the future. Every bit of information has the potential to help them when diagnosing you. I also understand what it's like to freak out about the "little things" and people around you being negative about that. It happens to me often and I end up having to internalize a lot of it.

Anyway, just wanted to let you know that you're not alone. Life is hard, and we've all got our crosses to bear. I hope yours grows lighter soon. Keep your spirits up and you'll be able to adapt to these situations. I know I'm being vague with these sentiments, but sometimes even the most wandering words can have an impact. Chin up, head held high.

heh. No, I'm not put off by your suggestion of anti-psychotics [which are also known as neuroleptics- though an older term sometimes it sits better with people!] In fact I did take risperidone for a while several years ago when trying to address some symptoms related to bipolar disorder and found that the risperidone actually assisted to some degree with sensory issues as well. [anti-psychotics tend to help psychotic symptoms, as the name would suggest, but not psychopathology]

For various reasons I stopped taking it and switched to aripiprazole, which was better suited to me but ended up helping sensory sensitivities even more. Many of the bipolar issues that I was originally taking the AAPs for have been addressed by other means; AAPs should really be used only as truly necessary do to various potential serious side effects [but really that's like any medication] plus; AAPs will often lower the seizure threshold and we are attempting to stay away from those meds at least for the time being :[

Risperidone is actually often prescribed for those on the spectrum for various reasons and has been approved by the FDA as an intervention- though, I mean, sometimes take those things with skepticism maybe? Unsure.

...

Last edited by LookTwice on 18 Sep 2014, 3:25 pm, edited 1 time in total.

So, while that is true...
as i tried to express in my post, I don't normally get this upset at this point. Which was one of the things that was really concerning me.
it's also not common for people to get so upset they end up vomiting.

And this is going to sound jerky, because it's like "thanks but no thanks for your help"... only that's not what I'm trying to express so hear me out.

I do appreciate the responses because I appreciate the attempts at support. Some of it, though [in general, not just LookTwice] I am kind of percieving as "it's no big deal".

That could be my fault, maybe I wasn't explicit about some of the things I can't do anymore. it's really really frustrating though, to be told that, essentially Im worrying more than necessary.

The fact is that I'm barely surviving financially and if I don't get some serious assistance with pretty much everything, my health is going to continue to get worse. This is because the more crap I eat [see: pretty much anything that is not home cooked because gluten, dairy, soy and eggs do a number on my body] the worse everything gets for my body. I then have even worse GI symptoms, I get weaker, I am in more pain, I get dehydrated, it's even HARDER for me to eat right, etc etc etc. It's a cycle.

I've spent several years working with "I'm going to be ok" and it got me through autism, bipolar, and OCD. Epilepsy, a severe head trauma/car accident, migraines... probably other things I'm forgetting.
Then I turn around and find my body is falling apart and no one seems to know how to fix it.

I'm not saying I don't appreciate that people are being supportive. But I'm saying I'm not exactly crying wolf here.

It's also easy to assume that my doctors don't actually do anything and all we do is sit around and just hope things will get better. That's not the case- but my point was that because even if we knew that A, B, or C were the exact problem- getting to a better and more stable point healthwise isn't an overnight fix.

Thinking "this too shall pass" hasn't fixed anything in the past but it has made things tolerable. It has assisted in coping. My point was that it has ceased to help me cope and I have nothing to replace it.

I know I seem very unappreciative. I'm not.

I'm very frutrated that it's like even when i think I am explicityly explaining my circumstance I have to justify the awful feelings I am experiencing.

I have no idea how to deal with that other than perhaps not share, but that sucks too. And even posting THIS- it's like, now everyone is just going to b***h at me.

I run into this thing where I can be very explicit about feeling like I want to die, for example. Which has rarely raised red flags because few people are calm and explicit like that when they fear they are going to kill themselves. This is not the case right now, but the principle can be applied to any challenging circumstances in my life.

No one's going to b***h at you. This is a serious situation and only the most callous individual would get angry at you for expressing the feelings you're going through. Unfortunately, kind words is about the only thing people can offer here. No, it won't solve anything. It won't get rid of the anxiety, the frustration, or the pain. Yet, if one goes through life never expressing these feelings and never reading a single kind word, the abyss some people inhabit grows ever larger.

Keep venting out whatever you feel is necessary. There are so many of us out there who suffer from a myriad of different issues. We must all strive to do the best we're capable of and try to make sense of this existence. We determine our own level of involvement. We determine how we let adversities affect us. You're an intelligent, spirited human being. You would not have gotten this far having suffered so much without having a great reserve of willpower.

That having been said, did you contact those closest to you for assistance? Family? Boyfriend? Is anyone able to help you more directly in your life right now?

If it helps, I've been there before and I'm there now. Lately I've been startling very easily too. My phone will beep with an email or text message and I'm scared outta my skin. At the suggestion of my therapist, I'm trying conventional Japanese Zen meditation. Last night was my first time and I felt fleeting moments of being free from anxiety so I know it might very well be possible with concerted effort and practice.

Have you thought about trying this? I had not even considered it before but I cannot live on Xanex and Prozac does relieve depression and, to a lesser extent, anxiety. However, my antidepressant only goes so far.

Kind of getting everything down helped me realize precisely what some of the bigger issues are and what the biggest one is, likely:

It's incredibly difficult for me to "self-sooth" right now, as I tried to express. [The thing about flipping out]
part of that is not knowing what to do in the moment or having the presence of mind to figure it out. So I talked to the boyfriend about all of this and he understands it [which isn't really a surprise] and agreed to help, basically, bring it to my attention if he sees or knows that this is going on or that I'm in a situation where I'm frustrated and on the verge of having my brain melt.

It sounds like such a small thing?
But to have someone get what you are talking about and just be willing to assist by reminding you of things or help you try to manage what you are feeling is huge.

Also, he said he'd try to stay over for a couple days at a time- but I know that can be difficult on him, so it's hard for me to ask much when he has some health things going on too.

We are going to try that though because maybe, like... By Our Powers Combined, stuff like making dinner will be a little bit easier.


I've considered this, but often been resistant to meditation for the most part. [even though, thinking about it, I likely practice it to some degree when in pain or extremely depressed, etc in small moments]

I'm kind of trying to build up the courage to try it for real at some point but the idea of meditation in any form sort of freaks me out [just for me to do it, not for other people to] and it's complicated to explain why.

I need to figure somethign out though.

Him staying over for a while sounds like a solid plan. Every little bit helps.