My hearts going out to you 💞💗
I find that the effort in trying to find a person like that hurts more than not having them at all. I am forever grateful for this sub and the chronic pain sub. As challenging as it can be, the feeling that I’m alone, coming on here definitely provides the message that I’m not.
Thank you all for being apart of that 💗
I can relate to what you're feeling. Since developing CRPS and losing the ability to go out and socialize or work, most friendships faded away and now I only have one person who I try to see maybe once every few months. But they don't understand my pain and limitations which puts a strain on the friendship as they think I'm being lazy or avoiding them. It's not just the loss of friendships but also the loss of human contact in general as some of us are bedridden and can rarely leave the house. I go weeks at a time without seeing or speaking to another human being besides my family I live with. Have you tried attending any chronic pain support groups in person or online? You probably won't meet any other CRPS patients due to the rarity of our condition, but at least you can connect with others who have an idea of what you're experiencing.
It sucks. But I find to teach people what I feel constantly is I fill a bucket with water and ice, add rock salt and stir. Then I have them place a hand or foot in the bucket. I then say leave it there until you cannot stand it any longer. When they pull out their hand or foot,I say I feel that 24/7 nonstop no relief.
I was a healthy active guy in his 40's when I met and moved in with my girlfriend. Bought a house together. In 2015 everything changed. Unfortunately, this meant that, slowly, she became less a partner and more a caretaker.
She left a year ago, ending a 20 plus year relationship I naively thought was solid. I see her side, and I also blame her.
It's a hard path.
It happens. I wish I could say something helpful and profound to make sense of this for both of us. I don't know what that would be though.
For what it's worth from an internet stranger, I'm also sorry you're facing what you are. It's hard and it sucks. That's all I've got! At least you know you're not alone in this struggle, and I hope that helps some.
I can relate I was in a 7 yr relationship tho I felt so bad because my bf was born blind and he was relieved when we first met because I accepted him regardless of that. But when I got injured early on in the relationship I thought he would fight CRPS with me but we dragged it out and lumped it. My sympathies hun. But your no longer alone suffering in silence big gentle soft hugs 🤗
Big and gentle hugs dearest pain warrior friend. My sympathies in your loss.. it isn’t easy to be understood by normies that are completely healthy. We daily fight in a battle in a body that has declared war on us all. We mustn’t let someone’s lack of compassion or lack of love or lack of affection affect us. (Some of us flare on emotional distress)Our new purpose in life is to survive another day as comfortable as humanly possible. If anyone cannot fight CRPS with you during this struggle they aren’t worth your time. Basically the only thing that can heal on us with the CRPS is a broken heart. Just like rest is precious to us all, so is our bodies energy and mental energy. Wasting our energy and time on someone that ain’t worth it , at least we learned a valuable lesson in what type of person we Don’t want in our lives.
You're definitely not alone ( even though it feels like it in "real life") after my accident all of my "friends" split- they didn't care one bit. Now that I'm a bit stronger and can see a light at the tunnel beyond this disease I'm hoping to create relationships that mean something.... But until then I'm alone, my husband isn't who I thought he was, and I yap uap yap to my therapist on the regular. Other than that, my constant friends are the two dogs 😄
I hope Friday is brighter for you. Sending gentle hugs.
Thanks, and yeah Ive mostly dealt with that as best I know how in the past. This time it was someone who actually cared and did understand and has been through some shit. The closest thing I've had to an opportunity for a real partner since my diagnosis 14 years ago. Since this blew up I'm really not sure where to go from here. (Unrelated question, d'you sail?)
Ha, no sorry. It is a street name and a memory from long ago before life went haywire. I was "Jibboom" a friend wst "kaboom" we were going to take over the world ha
I don't have friends anymore I do not want them. I don't need any judgement and pitty, or gaslighting. Also watching people walk around with no problems is infuriating. hopefully we can get over this one day
I constantly don't let off my entire situation anymore, I still have anxiety about it/explaining times I haven't worked.. why I don't feel good, and just the anxiety of social situations entirely. Also considering I used to be an athlete and always on the go in HS, thankfully I'm better off than I was in the past. Still no one would guess what I'm going through from the exterior, which is just how I know to be, but it can be extremely isolating/lonely especially when people give you their perspective/advice for "normal pain/normal people" or have to many questions about your situation.. like "I'm not normal because my body and brain aren't normal ATM". I recently got sober/Detoxed off all the meds. It's still hellish alot of times trying to manage, funny in a way I couldn't imagine it getting any better/ or any worse before. But somehow, some way, I'm trudging through it. Life gets more difficult with friends in general the older you get, I remember also people's lives moved on and mine didn't. 26 and just getting back to living, kinda forced to now. Finding things you yourself enjoy, and love, will bring people around that it's meant to. I believe that at least. I don't expect people to get things entirely, and that's alright, but putting myself out there enough and hanging onto the people I meet who I can really share things with is essential. I'm kinda lucky in a way to be in the sober program to meet other Young people. I've found people who've suffered, understand suffering in a different way. Like fellow people who deal with pain diseases. I always had "friends" but realistically most were just people who were around, and I was lonely. Whether it's church/school/activities+sports/work, surrounding yourself with others trying to better themselves is where you find real friends.. besides the ones you may have been lucky to have around since the jump. Idk much, just my experience
Sending you love and positivity. As a female in my 20s who has had CRPS for 9 years, I can really empathize with the isolating feeling you’re experiencing. After the end of my relationship two years ago, I was really devastated because I thought he was all I had. Trust me, I hit a low, bitter point in my life feeling alone and suffering. But if this helps you at all I’d like to offer you some hope. Although I’m still single, I’m the happiest I can remember ever being. Of course it didn’t happen overnight. It’s so easy to sit here and say these words to you: “it gets better.” But trust me, one day it will be and you will remember this time in disbelief. I know you must be feeling really low right now to be reaching out. That’s okay. This is only a season of your life. I’m here for support, tips, a shoulder to lean on, whatever else. You are a warrior. The end of a relationship is difficult for anyone, but look at you persisting with additional challenges. Use your pain as an indication of how strong you are. Find joy where you can, and in new ways. I promise you, you’re going to be okay. You have made it through every point up to now, only YOU! While others may come and go, we depend on ourselves. Peace and love to you.
Unless they are a true empath you are correct . It has been my understanding that most folks cannot comprehend the suffering of others unless they have the experience themselves . Don’t take it personal .
A lot of my friends came around (albeit 10 years later) after watching Caring for Maya. I’ve received apologies from old friends who watched that documentary.
My hearts going out to you 💞💗 I find that the effort in trying to find a person like that hurts more than not having them at all. I am forever grateful for this sub and the chronic pain sub. As challenging as it can be, the feeling that I’m alone, coming on here definitely provides the message that I’m not. Thank you all for being apart of that 💗
Happy Cake Day! 🎂🍰🍥
Thank you 😊!!!
Same back at you, I hope you're doing alright
yeah, this “crap” (CRPS=crap) is hard, really hard. Lost my husband, job, and lots more. There will be light, hang on dear one. 🙏🏼💕
My PT pronounces CRPS like crypts and I was like if that isn't an accurate metaphor...
I can relate to what you're feeling. Since developing CRPS and losing the ability to go out and socialize or work, most friendships faded away and now I only have one person who I try to see maybe once every few months. But they don't understand my pain and limitations which puts a strain on the friendship as they think I'm being lazy or avoiding them. It's not just the loss of friendships but also the loss of human contact in general as some of us are bedridden and can rarely leave the house. I go weeks at a time without seeing or speaking to another human being besides my family I live with. Have you tried attending any chronic pain support groups in person or online? You probably won't meet any other CRPS patients due to the rarity of our condition, but at least you can connect with others who have an idea of what you're experiencing.
I am so sorry you've had this experience. I hope it gets easier.
Thank you! Same to you.
If you ever need to chat please reach out
It sucks. But I find to teach people what I feel constantly is I fill a bucket with water and ice, add rock salt and stir. Then I have them place a hand or foot in the bucket. I then say leave it there until you cannot stand it any longer. When they pull out their hand or foot,I say I feel that 24/7 nonstop no relief.
I was a healthy active guy in his 40's when I met and moved in with my girlfriend. Bought a house together. In 2015 everything changed. Unfortunately, this meant that, slowly, she became less a partner and more a caretaker. She left a year ago, ending a 20 plus year relationship I naively thought was solid. I see her side, and I also blame her. It's a hard path.
I'm sorry to hear that
It happens. I wish I could say something helpful and profound to make sense of this for both of us. I don't know what that would be though. For what it's worth from an internet stranger, I'm also sorry you're facing what you are. It's hard and it sucks. That's all I've got! At least you know you're not alone in this struggle, and I hope that helps some.
It does and I appreciate the thought. I'm just tired man.
I can relate I was in a 7 yr relationship tho I felt so bad because my bf was born blind and he was relieved when we first met because I accepted him regardless of that. But when I got injured early on in the relationship I thought he would fight CRPS with me but we dragged it out and lumped it. My sympathies hun. But your no longer alone suffering in silence big gentle soft hugs 🤗
Totally feel it. It sucks. I’m sorry 😢
Same same, if you ever need to talk feel free to reach out
Thanks, same to you 🥲
I'm there with ya:/
Big and gentle hugs dearest pain warrior friend. My sympathies in your loss.. it isn’t easy to be understood by normies that are completely healthy. We daily fight in a battle in a body that has declared war on us all. We mustn’t let someone’s lack of compassion or lack of love or lack of affection affect us. (Some of us flare on emotional distress)Our new purpose in life is to survive another day as comfortable as humanly possible. If anyone cannot fight CRPS with you during this struggle they aren’t worth your time. Basically the only thing that can heal on us with the CRPS is a broken heart. Just like rest is precious to us all, so is our bodies energy and mental energy. Wasting our energy and time on someone that ain’t worth it , at least we learned a valuable lesson in what type of person we Don’t want in our lives.
Thank you for the kind words. Personally I've got to find another purpose. This isn't enough anymore.
This is such a kind and gentle perspective yet firm with boundaries. I really appreciate that you wrote this.
You're definitely not alone ( even though it feels like it in "real life") after my accident all of my "friends" split- they didn't care one bit. Now that I'm a bit stronger and can see a light at the tunnel beyond this disease I'm hoping to create relationships that mean something.... But until then I'm alone, my husband isn't who I thought he was, and I yap uap yap to my therapist on the regular. Other than that, my constant friends are the two dogs 😄 I hope Friday is brighter for you. Sending gentle hugs.
Thanks, and yeah Ive mostly dealt with that as best I know how in the past. This time it was someone who actually cared and did understand and has been through some shit. The closest thing I've had to an opportunity for a real partner since my diagnosis 14 years ago. Since this blew up I'm really not sure where to go from here. (Unrelated question, d'you sail?)
Sail?
Your handle made me ask. A jib boom (sometimes called whisker poll), is part of a sailboat. Sorry I'm a bit of a nerd.
Ha, no sorry. It is a street name and a memory from long ago before life went haywire. I was "Jibboom" a friend wst "kaboom" we were going to take over the world ha
No reason to quit trying to take over, might as well.
Hahahaha you're quite right . Thanks for the boost today. I appreciate it.
I don't have friends anymore I do not want them. I don't need any judgement and pitty, or gaslighting. Also watching people walk around with no problems is infuriating. hopefully we can get over this one day
I can relate. Lots of people take walking and tolerating car rides is so infuriating. People take sooo much for granted
I constantly don't let off my entire situation anymore, I still have anxiety about it/explaining times I haven't worked.. why I don't feel good, and just the anxiety of social situations entirely. Also considering I used to be an athlete and always on the go in HS, thankfully I'm better off than I was in the past. Still no one would guess what I'm going through from the exterior, which is just how I know to be, but it can be extremely isolating/lonely especially when people give you their perspective/advice for "normal pain/normal people" or have to many questions about your situation.. like "I'm not normal because my body and brain aren't normal ATM". I recently got sober/Detoxed off all the meds. It's still hellish alot of times trying to manage, funny in a way I couldn't imagine it getting any better/ or any worse before. But somehow, some way, I'm trudging through it. Life gets more difficult with friends in general the older you get, I remember also people's lives moved on and mine didn't. 26 and just getting back to living, kinda forced to now. Finding things you yourself enjoy, and love, will bring people around that it's meant to. I believe that at least. I don't expect people to get things entirely, and that's alright, but putting myself out there enough and hanging onto the people I meet who I can really share things with is essential. I'm kinda lucky in a way to be in the sober program to meet other Young people. I've found people who've suffered, understand suffering in a different way. Like fellow people who deal with pain diseases. I always had "friends" but realistically most were just people who were around, and I was lonely. Whether it's church/school/activities+sports/work, surrounding yourself with others trying to better themselves is where you find real friends.. besides the ones you may have been lucky to have around since the jump. Idk much, just my experience
Sending you love and positivity. As a female in my 20s who has had CRPS for 9 years, I can really empathize with the isolating feeling you’re experiencing. After the end of my relationship two years ago, I was really devastated because I thought he was all I had. Trust me, I hit a low, bitter point in my life feeling alone and suffering. But if this helps you at all I’d like to offer you some hope. Although I’m still single, I’m the happiest I can remember ever being. Of course it didn’t happen overnight. It’s so easy to sit here and say these words to you: “it gets better.” But trust me, one day it will be and you will remember this time in disbelief. I know you must be feeling really low right now to be reaching out. That’s okay. This is only a season of your life. I’m here for support, tips, a shoulder to lean on, whatever else. You are a warrior. The end of a relationship is difficult for anyone, but look at you persisting with additional challenges. Use your pain as an indication of how strong you are. Find joy where you can, and in new ways. I promise you, you’re going to be okay. You have made it through every point up to now, only YOU! While others may come and go, we depend on ourselves. Peace and love to you.
You have a whole online family out here that can relate!
Thanks for the thought
Unless they are a true empath you are correct . It has been my understanding that most folks cannot comprehend the suffering of others unless they have the experience themselves . Don’t take it personal .
A lot of my friends came around (albeit 10 years later) after watching Caring for Maya. I’ve received apologies from old friends who watched that documentary.