Endless hours of diary keeping since I learned writing is to blame for that I believe Sybil :D Writing has always been the thing that has kept me somewhat "sane", so I have a lot of experience in articulating how I feel and why I think I feel that way I guess... In fact, one of the first things I thought about when my wrists went out was "how will I ever write again if this pain keeps going like it has been with my back?!". I mean, one wrist is something, I can always learn to write with the other hand, but both of them?! I don't think I could take it. But thank you very much for your compliments :) It kind of made my day :)
And today was a better day... Your message also made me feel better Grandma J, which I will reply to now. I feel less depressed. Maybe the fact that I'm in less pain is a factor here too.
Sybil I hope I didn't hijack your discussion and made it about something else! I just want to tell you this, though I believe this detachment and indifference is a defence mechanism, especially if it's not a long-term thing, it also sounds like you could be getting depressed as well. I'm not saying that you are, I'm just saying take care of yourself - both physically AND mentally. With the seasonal change on its way as well, it could be very easy to fall into that pit that I have fallen into time after time. And what I have learned is that keeping yourself from falling with everything that you have got is much more easier than climbing back up. So try finding another way of connecting with your body again, even if it is an annoyance. Because the depressed-kind of detachment is so easy to embrace. You just shut down. You do not waste any more energy fighting. And it seems better for a while. Sometimes you don't even realize that you are going down because it's so familiar and comfortable. Until you begin suffocating and can not remember how to breathe. So do what you need to do to stay away from depression :)
Yep, that's about it I guess :)
Sybil said:
LL, how on earth do you write about some sad experiences and struggles in such an uplifting and interesting way? You are never dour, there's always this richness. When we come here asking 'what's the best exercise?' or 'anyone have experience of this or that drug?' it's all very straightforward. Talking about the emotional side is more complex as, in my view anyway, there's no one size fits all remedy for feeling blue. The closest I can get is never blame yourself for it, which I could have said in those 5 words but seem to have dragged out a bit!
Thank you Rachael for your kind words :) I didn't know about the apps though. That's a comforting thought right there, thanks :)
Rachael said:
LL, I agree with Sybil you have an amazing deep way with words. If your wrists never recover, which I am sure they will, they make computer apps that you can just talk to. You should never stop expressing yourself because it such a joy to the readers! Just my 2 cents on this. I have really enjoyed everyone's discussion on this!
Explaining detachment it harder for someone less poetic like me, but I do agree with it as a defense mechanism. For me, as I am 41 and only a little over a year into knowing psa, People my age are usually dealing with midlife crisis stuff, same job for years, same partner, handed all your life to raising kids etc. Thinking of all the things they need to accomplish quickly to regain their self back. For me its realizing that I am beeing robbed of all that. Not that I don’t have regrets or things I wish to have already done but that I feel like I can’t even enjoy what I have accomplished or even likely reep my rewards for it all. It will be a miracle to make it to full paid retirement, watching my sons football games hurts (bleachers and bad backs don’t mix well), and so much more that I could go on and on. I am so angry with my body I could scream at times! I guess what I am trying to say that I don’t morn what I haven’t done half as much as what I can no longer do. I deal with that by becoming somewhat unattached to myself on emotional levels.
Fascinating thread with fascinating, wonderful people. I want to join in, but maybe later: it’s a busy day here in the Canadian hinterland.
If only we could get together for an evening!
I really understand that! I know what you mean... But also, I mourn what I might never get the chance to do! I'm still somewhat in the dark about what's going on in my body, so I have this feeling of "rushing" everything, while I can function somewhat normally! I spent so many years unemployed, depressed, living in a room reading books and trying to survive my PhD, now I'm afraid I'll never get the chance to live a fulfilling life, build up a career, be independent, travel the world and see wondrous things... The question "how much more time do I have until I can't function on my own" is constantly there, even when I'm not consciously thinking about it... This illness has definitely changed something inside me.
Rachael said:
I guess what I am trying to say that I don't morn what I haven't done half as much as what I can no longer do.
Yes, I think something has changed inside of me too. The saving grace for me is that the years before getting really sick to a degree that could no longer be ignored were actually harder than those since. I felt so dreadful but as far as I knew, I was a healthy person. I didn't understand and didn't even consider that I might have some sort of disease ... that wasn't on my radar. Those were wasted years in some ways, apart from earning good money & I don't even know what I did with that. My heart wasn't in my teaching job, latterly, but I worked on and on, not knowing what else to do. In the summer holidays instead of sleeping solidly for the first 2 weeks like normal teachers, I'd sleep for 4 or 5. In term time I'd work every night for hours & almost all weekend, trying to keep on top of things. Photos of me started to tell a story that I didn't understand ... I'd always looked younger than my years but they caught up & then some, so suddenly. I thought "if this is middle age, it stinks" and "how come those other middle-aged people are relaxed, how come they're laughing, how come they're coping?"
I could attribute that sad little story to stubborness, but I think basically I can be really, really dense, a massive 'avoider'. Now with my foot off the accelerator I'm trying to build a different life and I usually do feel more real, more on top of things than I have done for decades. I try to compensate for the lack of physical reserves by planning and thinking around things. I would very much like to be more spontaneous, very spontaneous but as a general rule that doesn't work out too well. Youth and spontaneity go together though and my heart goes out to you.
I've spent much of the last few years trying to train myself up as an artist. Something I should have done right from the start. I've made a lot of progress but I'm rushing too .... I'd like to be very technically at ease, authentic and original before I drop dead. The week before would just about do, but I've got to get there & there's still a hell of a way to go! So I suppose I am still striving & putting pressure on myself, but at something that works for me.
The amount of adjustment you have to make as a young woman is so unfair. But there are so many young (and not so young .... I've told my story!) people running around like headless chickens, perfectly healthy, perfectly unfulfilled, perfectly directionless. That leaves a lot of room to compensate for physical challenges by using determination and imagination. These are the things I tell myself, anyway.
ladylazarus said:
I really understand that! I know what you mean... But also, I mourn what I might never get the chance to do! I'm still somewhat in the dark about what's going on in my body, so I have this feeling of "rushing" everything, while I can function somewhat normally! I spent so many years unemployed, depressed, living in a room reading books and trying to survive my PhD, now I'm afraid I'll never get the chance to live a fulfilling life, build up a career, be independent, travel the world and see wondrous things... The question "how much more time do I have until I can't function on my own" is constantly there, even when I'm not consciously thinking about it... This illness has definitely changed something inside me.
Rachael said:
I guess what I am trying to say that I don't morn what I haven't done half as much as what I can no longer do.
Yep. I guess I don't think about the future that much anymore or if I do it's quite practical and focused. 41 is an age when you have definite expectations of how things are going to pan out based on what you've built up. I got married at 40 .... thought the world was my oyster then & for a few years it was.
Rachael said:
Explaining detachment it harder for someone less poetic like me, but I do agree with it as a defense mechanism. For me, as I am 41 and only a little over a year into knowing psa, People my age are usually dealing with midlife crisis stuff, same job for years, same partner, handed all your life to raising kids etc. Thinking of all the things they need to accomplish quickly to regain their self back. For me its realizing that I am beeing robbed of all that. Not that I don't have regrets or things I wish to have already done but that I feel like I can't even enjoy what I have accomplished or even likely reep my rewards for it all. It will be a miracle to make it to full paid retirement, watching my sons football games hurts (bleachers and bad backs don't mix well), and so much more that I could go on and on. I am so angry with my body I could scream at times! I guess what I am trying to say that I don't morn what I haven't done half as much as what I can no longer do. I deal with that by becoming somewhat unattached to myself on emotional levels.
Me too! I'm much more comfortable talking than writing! I doubt I'll ever leave North America, though! Anybody want to have a meeting somewhere in the USA?? :-)
ladylazarus said:
Now that would be something!!! :) I truly wish we could all get together and have a real conversation :)
First of all, it's so nice that you are an artist!!! Wonderful!!! Wish I could see some of your work :) And oh my god I really know what you mean with wanting to make something authentic and original before dropping dead (I also might have laughed a little bit more than I should have on the week before joke :D) Because that's exactly how I feel about writing... I just want to "create" something of worth... And something purely mine... A little egoistic huh? Well, there was a line in Woody Allen's Midnight in Paris, don't know if you guys have seen it... Hemingway says to the main character, who is a struggling writer something like this: "when you walk in to a room, YOU are the best writer there! Unless I'm in the room too. In that case I AM the best writer in the room!" :D This line was supposed to be a joke, and it is hilarious, still makes me laugh, but it's actually a reminder to me that if I truly want to be writer I should be more a little more egoistic, well, maybe I don't have to be obnoxious but I should at least trust myself a little more! I should own my work! I can be a little too self-doubting, which is truly a deal breaker if you want to be a writer... And hey, if you haven't watched the movie already, I highly recommend it! :) It's nothing like Allen's previous work, definitely no Annie Hall, but it's a movie that warms your heart :) (Like I said, very non-woody allen :D )
And what you said about compensating for physical challenges was really encouraging! You are so right, andI will keep that in mind... So thanks :)
Sybil said:
. I'd like to be very technically at ease, authentic and original before I drop dead. The week before would just about do, but I've got to get there & there's still a hell of a way to go! So I suppose I am still striving & putting pressure on myself, but at something that works for me.
The amount of adjustment you have to make as a young woman is so unfair. But there are so many young (and not so young .... I've told my story!) people running around like headless chickens, perfectly healthy, perfectly unfulfilled, perfectly directionless. That leaves a lot of room to compensate for physical challenges by using determination and imagination. These are the things I tell myself, anyway.
Lol! I can hardly muster the audacity to call myself an artist usually though I've sold a few things now .... & I must put in a good 35 hours a week ... I guess taking ownership of the things we do that mean so much to us is a bit like finding the right balance between being real about having PsA and how it affects us as against wallowing in it or, on the other hand, denying it. Never was too good at balance but I'm trying!
I'm planning on watching Midnight in Paris this weekend, thanks for that!
ladylazarus said:
First of all, it's so nice that you are an artist!!! Wonderful!!! Wish I could see some of your work :) And oh my god I really know what you mean with wanting to make something authentic and original before dropping dead (I also might have laughed a little bit more than I should have on the week before joke :D) Because that's exactly how I feel about writing... I just want to "create" something of worth... And something purely mine... A little egoistic huh? Well, there was a line in Woody Allen's Midnight in Paris, don't know if you guys have seen it... Hemingway says to the main character, who is a struggling writer something like this: "when you walk in to a room, YOU are the best writer there! Unless I'm in the room too. In that case I AM the best writer in the room!" :D This line was supposed to be a joke, and it is hilarious, still makes me laugh, but it's actually a reminder to me that if I truly want to be writer I should be more a little more egoistic, well, maybe I don't have to be obnoxious but I should at least trust myself a little more! I should own my work! I can be a little too self-doubting, which is truly a deal breaker if you want to be a writer... And hey, if you haven't watched the movie already, I highly recommend it! :) It's nothing like Allen's previous work, definitely no Annie Hall, but it's a movie that warms your heart :) (Like I said, very non-woody allen :D )
And what you said about compensating for physical challenges was really encouraging! You are so right, andI will keep that in mind... So thanks :)
Sybil said:
. I'd like to be very technically at ease, authentic and original before I drop dead. The week before would just about do, but I've got to get there & there's still a hell of a way to go! So I suppose I am still striving & putting pressure on myself, but at something that works for me.
The amount of adjustment you have to make as a young woman is so unfair. But there are so many young (and not so young .... I've told my story!) people running around like headless chickens, perfectly healthy, perfectly unfulfilled, perfectly directionless. That leaves a lot of room to compensate for physical challenges by using determination and imagination. These are the things I tell myself, anyway.
I feel the same way, Sybil. Because I've never had any formal art school, and I am an amateur. But, for a long time I had the desire to become someone important with my portraits. We had bought me a nice Nikon camera so I could take interesting photos--I even planned to go to kids' sporting events and photograph action photos and then draw them. But, my camera was too heavy for my weak wrists! Drawing became so painful to my aching hands/fingers a couple of years ago that I lost interest in it and became totally unmotivated. I've continued to be really lazy about it! My kids keep encouraging me, but, it seems easier to just sit around and watch TV when I have leisure time! Sybil said:
Lol! I can hardly muster the audacity to call myself an artist usually though I've sold a few things now .... & I must put in a good 35 hours a week ... I guess taking ownership of the things we do that mean so much to us is a bit like finding the right balance between being real about having PsA and how it affects us as against wallowing in it or, on the other hand, denying it. Never was too good at balance but I'm trying!
I'm planning on watching Midnight in Paris this weekend, thanks for that!
ladylazarus said:
First of all, it's so nice that you are an artist!!! Wonderful!!! Wish I could see some of your work :) And oh my god I really know what you mean with wanting to make something authentic and original before dropping dead (I also might have laughed a little bit more than I should have on the week before joke :D) Because that's exactly how I feel about writing... I just want to "create" something of worth... And something purely mine... A little egoistic huh? Well, there was a line in Woody Allen's Midnight in Paris, don't know if you guys have seen it... Hemingway says to the main character, who is a struggling writer something like this: "when you walk in to a room, YOU are the best writer there! Unless I'm in the room too. In that case I AM the best writer in the room!" :D This line was supposed to be a joke, and it is hilarious, still makes me laugh, but it's actually a reminder to me that if I truly want to be writer I should be more a little more egoistic, well, maybe I don't have to be obnoxious but I should at least trust myself a little more! I should own my work! I can be a little too self-doubting, which is truly a deal breaker if you want to be a writer... And hey, if you haven't watched the movie already, I highly recommend it! :) It's nothing like Allen's previous work, definitely no Annie Hall, but it's a movie that warms your heart :) (Like I said, very non-woody allen :D )
And what you said about compensating for physical challenges was really encouraging! You are so right, andI will keep that in mind... So thanks :)
Sybil said:
. I'd like to be very technically at ease, authentic and original before I drop dead. The week before would just about do, but I've got to get there & there's still a hell of a way to go! So I suppose I am still striving & putting pressure on myself, but at something that works for me.
The amount of adjustment you have to make as a young woman is so unfair. But there are so many young (and not so young .... I've told my story!) people running around like headless chickens, perfectly healthy, perfectly unfulfilled, perfectly directionless. That leaves a lot of room to compensate for physical challenges by using determination and imagination. These are the things I tell myself, anyway.
Yet you are a talented artist. I know you are a very busy person too. Those of us who work with our hands or like to can really struggle with PsA. Mine are not too bad, though they cramp up when I'm painting. I'd work for 8 hours if I could but that's too hard usually. I bet you are good at all the things you do ... and there's nothing wrong with watching telly!
Grandma J said:
I feel the same way, Sybil. Because I've never had any formal art school, and I am an amateur. But, for a long time I had the desire to become someone important with my portraits. We had bought me a nice Nikon camera so I could take interesting photos--I even planned to go to kids' sporting events and photograph action photos and then draw them. But, my camera was too heavy for my weak wrists! Drawing became so painful to my aching hands/fingers a couple of years ago that I lost interest in it and became totally unmotivated. I've continued to be really lazy about it! My kids keep encouraging me, but, it seems easier to just sit around and watch TV when I have leisure time!
You are a talented artist, too, Sybil....and a good writer. When I think of good writers I think of Charlotte's Web.
I bet if your hands didn't cramp up, you could paint and paint. I used to draw all day and half the night before my hands got PsA. I would actually doze off drawing!! No, I'm not good at everything I do! Although when I decide to do something I see it to the end-so I'm very careful about what I choose to do!
Sybil, your artwork is phenomenal-you should share one as your profile pic!!! And, LL, I don't doubt you will publish a great book someday....and I can't wait to read it or see it made into a movie!
I need to figure out a way to rid my feet of this pain and my ears of ringing--they are two deterrents to my drawing. I can't concentrate when I'm annoyed!