Does anybody else feel increasingly detached from their own body? I suppose a lot of the time I must think of it as me. But very often it is an it, that annoying thing. I'm beginning to think I am just looking after it for a friend.
How about having dreams, that has me hiking up in the mountains. Then realize you can’t walk. I actually feel myself walking. That’s the strangest thing. So I understand.
Oh gosh. Enjoy those dreams Tired of pain. I hope they are at the very least bitter-sweet and sometimes better than that.
I actually can walk very well. When out walking I'm just me all over. I guess I'm just sick of all the 'surprises' my body keeps springing on me. I've disowned it, partly.
Tired of pain said:
How about having dreams, that has me hiking up in the mountains. Then realize you can't walk. I actually feel myself walking. That's the strangest thing. So I understand.
I never thought I'd have PsA even though I put up with psoriasis all those years. I accepted that but was always embarrassed about it. Having a weak back with pain enough for p.t. a few times since my 30s and having plantar fasciitis and a painful neck in my 40s--I thought those were all part of getting older, so it didn't bother me. Random pains that came and went just seemed normal, and then really bad fatigue I just chalked up to intolerance of caffeine, so insomnia. It wasn't until after all the pain and other symptoms of PsA caused the diagnosis that I started wishing I had a different body. But, I feel so lucky Enbrel is still working, and feel so bad for you, Sybil, that for reasons unknown you started rejecting or reacting to the Humira. I can understand how discouraging that is, and it reminds us that we can never be sure what's around the corner--even when everything seems to be going so good!
Not sure I want a different body, just feels a bit peculiar feeling so indifferent to this one! I guess that's how the mind works sometimes.
I don't know that I have reacted to Humira yet. That is yet to be decided I think. Kind of runs & runs!
You are a mystery! It would make you feel detached from your body, I'm sure. I'm just a little jealous of my mom and so many of my aunts and uncles who lived to a ripe old age with no major ailments--no auto-immune disease--no cancer--no nothing! Well, my mom has OA-mostly just her fingers, and I don't think you can count needing a pacemaker at 90 as an annoying, painful, disfiguring or embarrassing thing. So, when you're up against something nobody else in your extended family had to cope with, it is a little depressing. But then, I guess I can thank my lucky stars I'm still walking, talking, seeing, hearing, able to digest food, etc., etc., cuz there are lots of people way worse off than me who have problems with those natural things we take so much for granted!
Yes, yes I do! :) I understand the feeling so well... Just five minutes ago I was looking at my hands and trying to grasp the fact that these are, in fact, my hands (I've been having trouble with my wrists. I had mentioned my right wrist a couple of days ago and now it's both of them giving me hell. No inflammation. No swelling. Bloodwork normal. The doc wanted an MRI for both wrists mentioning a horrible thing called Kienbock's. So I'm really, really frustrated and upset.) I think the "detachment" thing is due to a gap, a void, a black hole between what your mind perceives as "normal" or "what should be" and "what is". It's like what happens with depression. There's a clash between the image and the reality. So you get detached. Take the emotions out of the equation because it's too overwhelming. So yes, it happens to me too :)
LL, my husband has Kienbock's!!! He has pins and screws in one hand because of it (had them put in like 20 years ago) and with his recent hand pain and swelling they've mentioned a possibility of Kienbock's in that hand, too! It supposedly comes from old broken bones, but I'm not 100% sure.
I am glad you recognise the feeling. I'm not being flippant or whimsical or whatever and it's not that I've stopped caring - I'm not neglecting myself, far from it. But the mind / body disparity that I suppose we all have to some extent seems to have grown.
I'd imagine it sometimes happens in more positive contexts. I guess elite athletes must treat their bodies very much like an 'it' at times. And I think not knowing what is going on also fuels disassociation - the way you describe looking at your wrists, it's as if they are holding out on you because you still do not know what you're dealing with.
ladylazarus said:
Yes, yes I do! :) I understand the feeling so well... Just five minutes ago I was looking at my hands and trying to grasp the fact that these are, in fact, my hands (I've been having trouble with my wrists. I had mentioned my right wrist a couple of days ago and now it's both of them giving me hell. No inflammation. No swelling. Bloodwork normal. The doc wanted an MRI for both wrists mentioning a horrible thing called Kienbock's. So I'm really, really frustrated and upset.) I think the "detachment" thing is due to a gap, a void, a black hole between what your mind perceives as "normal" or "what should be" and "what is". It's like what happens with depression. There's a clash between the image and the reality. So you get detached. Take the emotions out of the equation because it's too overwhelming. So yes, it happens to me too :)
Sybil,
I totally understand your position. There's such a disconnect still between the body I used to have that was strong and active and flexible and relatively pain-free and the one I have now that locks up, is swollen and sore, has a hard time with lots of simple activities and seems to complain about most everything I want it to do. I sometimes think that someone came in the night and swapped out my body for an older crappier model.
I try _REALLY HARD_ to be grateful for the functionality I still have. I do truly sometimes marvel at the fact that my body still can stand up, walk, go places, do things, against all the factors conspiring against it: a chronic illness, rampant inflammation, fatigue, a pharmacy shelf of medication it processes daily...
I try to have gratitude for what my body (or whomever's body this is) still can do, even though I don't recognize parts of it when I look in the mirror or as I watch my fingers while typing. But even with that gratitude it is hard not to feel some sadness for the body that I lost to this illness.
I feel disconnected from my body, but also a sense of betrayal – I fed this body well and dressed it pretty and I did all the right things for it – and now it has stood me up. Or mayb I should say it has sat me down.
I don't know if gratitude is uppermost, but being able to prance along the street sometimes, swim effortlessly & fast, sit down in a restaurant without falling on my bum in the process etc. are exhilarating when they haven't always been possible. Those of us who have come through severe PsA flares relatively unscathed enjoy some very simple things more than we would ever have thought possible I think.
But stuff happens & while I'm past crying about the stuff that's happening at the moment, I'm probably in the next phase ... and so I tend to my body like I used to change smelly nappies, on autopilot, glancing in the mirror to note new bald patches and new areas of psoriasis and then switching off. Sometimes this disease is like a crash course in getting very old, but there is the chance of rejuvenation when and if things improve. Or the option of acclimatising to new realities and the new strengths that can come with them.
janeatiu said:
Sybil,
I totally understand your position. There's such a disconnect still between the body I used to have that was strong and active and flexible and relatively pain-free and the one I have now that locks up, is swollen and sore, has a hard time with lots of simple activities and seems to complain about most everything I want it to do. I sometimes think that someone came in the night and swapped out my body for an older crappier model.I try _REALLY HARD_ to be grateful for the functionality I still have. I do truly sometimes marvel at the fact that my body still can stand up, walk, go places, do things, against all the factors conspiring against it: a chronic illness, rampant inflammation, fatigue, a pharmacy shelf of medication it processes daily...
I try to have gratitude for what my body (or whomever's body this is) still can do, even though I don't recognize parts of it when I look in the mirror or as I watch my fingers while typing. But even with that gratitude it is hard not to feel some sadness for the body that I lost to this illness.
Yep. Hear you. It's impossible to truly imagine what others feel but because you've said something similar a few times I'm gradually getting an angle on your perspective.
The best thing ever is not to notice your body but just feel comfortable in it, notwithstanding the aches and pains most endure after 40 or so. And for it to work.
Seenie said:
I feel disconnected from my body, but also a sense of betrayal -- I fed this body well and dressed it pretty and I did all the right things for it -- and now it has stood me up. Or mayb I should say it has sat me down.
Yes Sybil I think you're right! Sometimes I wish I had my very own scanning device, like one of those things in sci-fi movies. Like the ones in that movie Elysium. And it doesn't even have to fix me. Just bloody tell me what is going on! (I had a very, very dark thought here, but I deleted it because I don't want to make anyone uncomfortable). I remember being somewhat optimistic when I first joined this forum, thinking that I had the "depression" part under control, because I had so much experience with it and had battled it numerous times. But sometimes it's just hard to keep that up. I've been crying a lot lately. So I don't know, maybe the "autopilot" you mentioned is a good thing, a defence mechanism. Your body is "that thing" that you can have certain feelings toward, without having those feelings about "yourself" per se. For instance, in my condition, it's my body that is unstable and pathetic, not me. My body hurts, not me. My body is a mess, and not me...
Sybil said:
And I think not knowing what is going on also fuels disassociation - the way you describe looking at your wrists, it's as if they are holding out on you because you still do not know what you're dealing with.
We're all different. We really are - all - different. And it's not like there are just few categories such as 'brave people' and 'miserable crying ladies'. I reckon some of us are stoic, melodramatic, quiet, crying, cheerful, depressed, joyous, brave people. Damn, I bet most of us are.
I'm thinking about what you've said. Would I be depressed if I wasn't sort of numb, detached or whatever? Yes, I suppose I would. I've had a few days of defeat. You might not have the depression part completely under control, but is it the main thing right now?
ladylazarus said:
Yes Sybil I think you're right! Sometimes I wish I had my very own scanning device, like one of those things in sci-fi movies. Like the ones in that movie Elysium. And it doesn't even have to fix me. Just bloody tell me what is going on! (I had a very, very dark thought here, but I deleted it because I don't want to make anyone uncomfortable). I remember being somewhat optimistic when I first joined this forum, thinking that I had the "depression" part under control, because I had so much experience with it and had battled it numerous times. But sometimes it's just hard to keep that up. I've been crying a lot lately. So I don't know, maybe the "autopilot" you mentioned is a good thing, a defence mechanism. Your body is "that thing" that you can have certain feelings toward, without having those feelings about "yourself" per se. For instance, in my condition, it's my body that is unstable and pathetic, not me. My body hurts, not me. My body is a mess, and not me...
Sybil said:And I think not knowing what is going on also fuels disassociation - the way you describe looking at your wrists, it's as if they are holding out on you because you still do not know what you're dealing with.
I suppose you are right... And I probably have a very "good reason" to be depressed right now... I'm sure I'll get over this one too... I just get tired sometimes, like all of us do I guess. And it's really hard with already having a lifelong history with depression. I mean, I already had chronic depression long before my body betrayed me! (I was recently officially diagnosed with dysthymia by the way, which is a fancy name for chronic depression, where the patient is quite functional compared to an acute depression patient - for example, can write a PhD thesis!- but has "double depression" episodes and considers the symptoms a part of their character so "hi there!" :)) So I really don't need a "reason" to be depressed and yet I have one! Oh well... Today was one of the bad days. This week was a bad week. But maybe I'll wake up feeling better and more courageous tomorrow, who knows? :) After all, depression is a chronic illness too! At least in my case... So I shall handle it just like any other chronic illness... With patience!
I think you are really brave though... I think everyone in this forum are really brave. And just coming here, venting and sharing and "talking" about it is a healthy way of coping. And we are writing, which is actually one of the best ways of gaining a better understanding of what's going on, and thus having some sense of control over it. At least some sort of control on the way you handle it. I think we are "healthy" that way, and that's one thing we can all be proud of I guess :)
Sybil said:
We're all different. We really are - all - different. And it's not like there are just few categories such as 'brave people' and 'miserable crying ladies'. I reckon some of us are stoic, melodramatic, quiet, crying, cheerful, depressed, joyous, brave people. Damn, I bet most of us are.
I'm thinking about what you've said. Would I be depressed if I wasn't sort of numb, detached or whatever? Yes, I suppose I would. I've had a few days of defeat. You might not have the depression part completely under control, but is it the main thing right now?
I agree, Sybil, that we are all different. But, don't you think we're all a combination of all those traits you mentioned, but each of us with unique combinations of each trait? I can honestly say, the depression trait is not high on my list--but I've had my days. Especially lately--the last several months--just have a day or several hours where I feel "depressed"--crying, extremely sad--but then it lifts and I'm just fine. But, it's the "fed up" moments that get me down. LL, you have been dealing with depression in a big way--for most of your life, it sounds like. I can't even imagine how that must feel, just knowing how crappy a few hours of depression feels for me! Sybil, your sudden onset of different, new health problems probably has given you a reason to detach! But, I just know it'll get better--I think of so many things that you, I and most of the people on here went through throughout our lives. Just when everything seems to be going good, your body throws a curve ball AT YOU! It's such a struggle! I think of the two times my back went out last year--never did I ever think that would happen to me. I'd had back problems in the past that were painful for several weeks at a time--where I needed p.t., but that just hit me so hard, like nothing I ever expected. Things like that do remind us of how little control we have about our health and our future. Like Seenie said, you try to take good care of your body eating right, avoiding bad stuff, etc., and your body still lets you down!
I agree Grandma J. I suppose I was just clumsily trying to say that feeling totally fed up doesn't equate with some kind of failure. But of course that is just my take on things. So to my mind, the world around us can be pretty depressing & there are times in the course of the disease that hit us harder than others .... and therefore some feelings of depression make sense or are just part of being alive .... animals are so resilient but when they're ill you watch them go right down into themselves until they feel better.
I guess some drive full-steam through depression or are so naturally buoyant it doesn't happen. Others of us work with or around it or live with it. But I doubt anyone can handle it taking over.
A few years ago I tried this weird drug to stop smoking, think it was called champix. Nasty stuff in my opinion. It acts on the brain somehow and had the effect, yes, of stopping the desire to smoke which is good, but also wiped out feelings. No ups, no downs, just level zombie land. My husband was horrified by the change in me, he said it was like being married to himself! I've come to see the highs and the lows as part of the same mechanism & feeling detached & indifferent is not something I'm used to.
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!
Grandma J said:
I agree, Sybil, that we are all different. But, don't you think we're all a combination of all those traits you mentioned, but each of us with unique combinations of each trait? I can honestly say, the depression trait is not high on my list--but I've had my days. Especially lately--the last several months--just have a day or several hours where I feel "depressed"--crying, extremely sad--but then it lifts and I'm just fine. But, it's the "fed up" moments that get me down. LL, you have been dealing with depression in a big way--for most of your life, it sounds like. I can't even imagine how that must feel, just knowing how crappy a few hours of depression feels for me! Sybil, your sudden onset of different, new health problems probably has given you a reason to detach! But, I just know it'll get better--I think of so many things that you, I and most of the people on here went through throughout our lives. Just when everything seems to be going good, your body throws a curve ball AT YOU! It's such a struggle! I think of the two times my back went out last year--never did I ever think that would happen to me. I'd had back problems in the past that were painful for several weeks at a time--where I needed p.t., but that just hit me so hard, like nothing I ever expected. Things like that do remind us of how little control we have about our health and our future. Like Seenie said, you try to take good care of your body eating right, avoiding bad stuff, etc., and your body still lets you down!
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!
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!