Quantcast

Living with Psoriatic Arthritis (PsA)

Another probably lengthy rant from me


#1

I’ve been trying to keep up with everyone here but I don’t have the energy to do anything other then mind numbing games to keep my head from spinning…

Last Monday I truly wondered if I was going to be able to hang on… to not give up… On Wednesday i filled out a questionnaire from my psychologist and there should be a huge red flag on suicide… Then Thursday I was there and I felt a little better not on the edge but one step back… She asked how I felt but not if I thought I was in any actual danger… She just assumed the little bump in how I felt would be there for the 3 weeks I won’t see her… (she’s on vacation)

I’m worried because going to her could be what made me feel better… I didn’t realize she didn’t ask me about it until Friday… I was at the psychologist of the rehab program… finally!!(only took like 6 months… they said I could start right away… last time they said that was 2 months ago… I’m not allowed to think it’s going to be at least 2 more months now again… because past experience with every time they promised it would be soon isn’t important and should just be forgotten or else your just being negative instead of trying to safe yourself from disappointment)

Anyway during the conversation she never asked if I was suicidal and I’m not even sure what I said that made her ask me if I had any actual plans but she was the first medical person to ask me that… Even though I’ve been much more transparent with all the others…

Anyway it was very apparent she has a lot of experience with people in pain and at least seems like she really gets how hard it is… I really hope the program will help as much as she thinks it will… Whenever I finally get to really start…


#2

I hope it helps you too, @Cynthia.


#3

Those questionnaires for suicidal intent are greatly affected by how you are feeling at the moment. I have suferred from depression for 30 years, long before the PsA. Hang in there, things will be better, maybe not today, but soon. That is what I live by.

But, if you feel really bad and are having bead thoughts, call someone or a go to an ER.


#4

I know… I do… but when it gets bad I just don’t… But so far I just don’t do anything at all… I just get scared when it happens when I’m on my way home… I just really hope the waiting is over… Right now I have hope again things will get better…

I’m just so scared it will turn out I’m actually a lazy person who hates herself and the world all the way through and it’s not the pain… What if I learn who I am and what I want and I hate me even more… But then I think right now I want to die if things stay like this… So it can’t really get worse… If it does I won’t be here anymore so it can only get better…


#5

Hang in there. Last night about 11:00 while I was lying in bed it all sort of hit me. All the anxiety over making the decision to try the biologics and thinking about the constant pain I am in. I started crying and did for about an hour.

Since I am unable to sleep in a bed, I sleep on the sofa downstairs. I was gald my wife was upstairs because I didn’t feel like explaining things to her.

This morning, I am much better. I had just let things build and for no reason it hit me. We have days like that, just remember that tomorrow you may find a cure for the pain. That is how I got through 25 years of depression, then one day they found a solution and now it is all good.


#6

I’ve been doing that… I’ve been depressed for as long as I can remember… I’ve been happy for just a few years maybe 3-5 years… until I went down the slope again which let to the current crisis. Is it all worth it?.. people keep promising me that it is… And that it will get better… But what if it won’t?..


#7

It may be time you saw a good professional if you are not seeing one now. If your depression has been going on that long and is cycling I hope you consider meds for it. If you are currently taking meds for your depression it sounds like they are not working.

I have taken ost of them until we found something that works. I did have a vagus nerve stimulator put in in 2008 so my meds work much better now, but that is not a solutio for everyone.


#8

Please can I turn that around and say what if by learning who you are, you get to like you just a whole lot more?

And just keep a real tight hold of that, regardless. Big hugs Cynthia. Big and endless hugs.


#9

Hi Cynthia… I think I understand how you have been feeling and would like to share a little something that helped me out once when I suddenly went from being “down” to feeling completely “desperate” (that’s the only word I can use to describe it)… that sudden flip into the worst head space was actually brought on by a medication (but that’s whole other story), what got my passed that moment where it was touch and go, and kept me going till the medication wore out of my system was telling myself, over and over again,
"this is not ME this is my BODY making me feel this way"
Although this definitely is not a cure for depression, it did keep me going. Give it try if you ever find yourself in “that” moment, you know the one I mean :wink:
Thinking of you through this rough time… {{BIG HUGS}} all the way from New Zealand


#10

Who am I if I’m not my body? Who am I if I’m not the chemicals making me do things?.. Who am I if I’m not the thoughts I’m having… (my psychologist said that I’m not) I don’t even know what I is… Let alone know what it wants…

I don’t think my psychologist things there’s anything wrong with me except that the pain is causing me trouble… I think she thinks I would be normal if I just didn’t have pain… which is the complete opposite of what I read other people with invisible pain get… But I score very high on their autism test but they think it’s not autism it’s the pain… I’m depressed and suicidal from the pain and get angry from the pain…

But I feel like it is “in my head”… The pain just amplifies what’s already there… I just don’t know how to communicate that…

I’m not sure which is the chicken and which is the egg…

Thank you guys so much for your replies!! My head is spiralling…


#11

Cynthia I’m 61 flaming years old and I’m still wondering which is the chicken, which is the egg. Philosopher’s have tried but defining the self is virtually impossible.

You are certainly a distinctive and highly intelligent self! Just stick with us and please strive to be kinder to that self of yours! It ain’t easy, I know.


#12

I’ve often wondered that Cynthia. A lot of the mindfulness meditation also teaches that we are not our thoughts, and certainly, with PsA, most of us don’t want to think we are our body either!

After a lot of “well what am I then?” pondering (actually internal wailing might be a better description), I came to something that works for me (which is not to say it will work for anyone else). Written down it sounds a bit odd, but here it is. I am impermanent. Like the world, I change. I have thoughts, but the thoughts that I have had, do not define the ones I will have. I have done things, both good and not so good, but my past actions do not define my future ones. My body is the visible part of me, but that’s just a tiny part (though I don’t deny it can cause us enormous pain and challenges!).

In the same way, the pain is not me. It is not my pain, it is just pain. Highly unpleasant - yes, but who I am - no.

Well, re-reading that, it sounds ridiculously existential and rather totally irrelevant. But I will post, even if it’s just to let you know that there are others of us who have these exact same questions :slight_smile:


#13

Awww… at 56 I’m afraid I don’t know how to explain what I mean by “my body” not being “me” @Jen75 has put it better than I could ever find the words for it… perhaps it is a belief system that I have found works for me (and may, or may not, work for others) at this point in my life (and may well change tomorrow), where I see my body as only one part of “me”, sure heavily intertwined with the rest of me, but not all of who I am as a person.
I am not a psychologist, and can only try to help within the limit of experiences in my life to date. I do agree with your psychologist to the extent that pain sure can have a major effect on the way we think and feel, however, how we think and feel can change in an instant, at times despite the physical pain we can still feel happy.
As for the “chicken and egg” thing… there are many things in life that man has yet to define/develop an answer to after centuries of trying, with somethings I have found I just need to accept them without trying to understand them sometimes “it” just “is” and to try to understand how “it” came about (or what came first) would drive me completely crazy.
My heart goes out to you and where you are at at the moment, I wish I could find the words that might help, just know that people really do care!! {hugs}


#14

Your words do help! A lot… I feel less crazy when people get what I’m saying…

Thanks Jen I get what you mean and I also get that it’s not something to say out loud haha thank you so much for doing it anyway! I’ll try to see if that will work for me… right now I feel like I just need to find the tiny thing that is “me” but I guess it’s more like “where’s the end of the universe” and then asking but what’s behind that?..

I had a reintegration meeting on Monday… They said I need to work on not reacting emotional at work because it will hurt my relationship with everyone forever… But then if I just stay home it will hurt it too… There’s no middle ground… There’s no possible way for me to do what they want me to do… I don’t understand what I’m supposed to do…


#15

When I finally decided I needed ‘a shink’ for the want of a better phrase, I chose just good ol’ talking psychotherapy for reasons unconnected and before PsA hit me. I wasn’t an easy patient despite my ‘choice’ too.

This above I just totally ‘get’ Cynthia. It’s so unbelievable hard. This might not make an iota of sense to you but as I started that therapy, it became obvious to me that a part of me was so uncared for by me too, that truly I was just almost embryonic when its need made itself known, which it was doing increasingly, hence my less than cogent reactions to certain things. I’m still learning how to care for that bit and don’t always succeed either but despite, this lost ‘middle’ ground you talk of flashes at me occasionally, just to tell me that it remains actually possible.

Mostly I tend to cope better when I insist on thinking the types of thought processes that @Jen75 so eloquently expressed.

In other words I’m learning who is just me, and how I can react, which is very different to who I had always assumed I was and how I assumed I should react. My search enabled me to discover this bit of me that’s essential but that I wasn’t caring for at all. It wasn’t the whole of me but it’s an essential part of me. And without it I’m utterly emotionally crippled as I had so demonstrated for much of my life till then anyhow. I’m lucky though as I’m an ace compartmentiliser so function quite highly for quite a lot of the time. There’s simply nothing ‘ace’ about that ability either, please note. But it now makes better sense to me to know who I thought I was, I wasn’t at all. Maybe the ‘tiny’ thing you think is just you (please note how you expressed that - why are you tiny?) is something similar to that essential part of me that I wasn’t taking care of.

I can’t imagine at all that you’re crazy as you define it anyhow. Just no way! Hugs, x


#16

I hope you can open this link–it has some great advice we could all benefit from.


#17

Much as I react against touchy-feely-back-to-nature stuff, I thought this was a pretty good summary of one way in which we can ‘work’ on ourselves.

From quite a young age I was very interested in psychoanalysis, especially Freud. That left me with the lingering feeling that the unconscious reigns supreme and that we have little control over our state of mind. Fast forward and I no longer think like that, not exclusively anyway.

Good relationships help immeasurably. But to get 'em in the first place it helps to like yourself. And I have ‘worked on myself’. I’m pretty sure that, for me anyway, easing up on myself doesn’t show results in a day or a week, it can take a while to feel better. I’m all for getting the best help possible. But also for acknowledging that real people - even ones like me and I was frankly loopy-loo out of control when I was younger - can do ‘little things’ along the way to reset our sense of self and control the self-dislike etc.


#18

It was people like Galileo, Marie Curie, Einstein, who asked… But what’s beyond that?

Not easy company, but it could be worse :blush:


#19

I like the dancing in the bedroom bit. I dance in the living room with my dog - yes really. It makes us both laugh or at least the dog gets really giddy and I usually fall over him on to the sofa.

The work I started doing on taking care of that essential little bit me is an ongoing process as @Sybil describes and it incrementally ever so slowly does ‘reset’ so even when I eff up which I do often, catching up again gets easier and it becomes more habitual.


#20

Cynthia, I’m so sorry to be reading this four days after you originally posted. I’ve been out of touch: Ben’s Friends is very busy dealing with … STUFF and I’ve got a bit, um, “involved”. Then yesterday the internet service for five cities and towns in our part of the province was down, so I was limited in what I could do. Those are reasons, of course, but not an excuse. I’m sorry you are going through this.

Your bottom-of-the-pit depression comes at a bad time: it’s November and the days are terribly short, there’s not much sunshine, the leaves have fallen and the whole time (in northern latitudes like we live in, anyway) is down, brown, sad and droevig. This is the time of year when I just want to run away, preferably to the southern hemisphere. Jen75 and Janson, get those sheets on the spare bed!

People have said so many things here that I would have said, or that I could repeat, but won’t. The people here know what you are dealing with, because they’ve been there. OK, no two people experience life in exactly the same ways, but they have been there, or near there, too. As have I.

It’s hard to love yourself, we know that too. But maybe you could cut yourself just a weeeee bit of slack. Forgive yourself for feeling down, for dragging your butt, for thinking dark thoughts. Remind yourself that if others around you knew what you were going through, they’d be amazed at what you can do despite it all. Because you are amazing, functioning at all, even if it’s with difficulty, given what you and your body are coping with.

And those dark thoughts: we’ve all had those too. Here’s a something to contemplate from someone who’s a lot better at saying it than I am.

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.”
― Haruki Murakami

Please remember those people that care about you, and that includes us. You are one of this group, and we want you to continue to be.

Hou je sterk. Stay strong.