I go through phases of either being ok with life and how I'm not up to speed with others my age and I'm perfectly content in my own world at my own pace then other times things will happen- like a social event, where I'll be reminded how distant I am from others and I feel like crying and feel terrible because I just can't relate to what they're talking about. Funnily enough for the most part I'm not actually bothered about doing what they've done it's just I feel so stupid and embarrassed because it's the norm and I'm always the odd one out, most people giving you an awkward blank look doesn't help either :/ I remember when I was at uni a friend said how they had already moved out when they went to another uni previously and I felt sick?! Like this wave of shame and sadness hit me how they'd done something adult that I hadn't (I commuted to uni) and I suddenly felt like I didn't deserve to be their friend anymore because I wasn't on their level. I finished uni 6 years ago but I still get that feeling with people when they reveal something adult they've achieved. I wish I could just accept it like it's not a big deal, rather than always feel so dumb and inferior :/
Oh god I know that feeling you're talking about so well so well. Think it has been one of the most constant feelings through my twenties/thirties. I would find myself trying to steer conversations away from topics so I didn't have to hear about it or be the position where i felt funerable to that shame you spoke about. Its the same thing I used to do before I had any experience with boys and all my friends were talking about the things they'd done with people and I felt so anxious and left out. i guess it's why I have isolated myself a bit more, and don't socialise as much. Instead choosing more small or one on one social things with people who know and understand my situation. I don't know whether it's a good thing but it means i have to deal with that feeling a bit less. My situation is going to improve a lot soon, but I will always have that feeling of playing catch up and like I've missed out, but trying to focus on the short term and making the best of the situation each day i guess. I just think we all have to remember that we all have different challenges, spanners in the works, curveballs, situations that make it impossible for us to have a journey that goes at the same speed or to the same situation. We just have hope that it works out in the end, even if it's not to the place or in the way we originally wanted. x
@@SophieEggleton yeah I avoid situations where people can say those things as much as possible, and resort to muting people so they don't "trigger" me. I guess in some ways it's not healthy to block things out and ignore reality but at the same time I think protecting my mental health is more important! I'm glad things are improving for you :)
I will always ask what do people mean by 'strong' in that way the people use this word for emotional strength. I always call bullshit on it because I think it's a false definition of ' strength' I think those of us who crumple feel the pain, express the pain then get up and move on are the real deal of ' strong' but we are often labelled as negative ' it's about your attitude, be positive' but if you don't deal with your feelings and ignore them they can come back and bite you in the arse later when you don't expect it xx
I completely agree. I hope that came across in the video. I don't like to message that crying or being sad or upset, and feeling the emotions and working through them isn't strong. I think the opposite is true. Plus some people naturally find it easier, why is society more likely to applaud those people than ones that have to fight really hard to cope and get through something x
I have only become a worse person since I got sick I think. I'm "only" 34 but right now it feels like I'm just waiting to die. Life didn't go the way it should have, so it's kind of over except the waiting game. The only good thing I can think of is the fact that nobody in this entire world will be able to exploit me. I'm the unexploitable. That's my new super power. I will never again going to work for someone elses interest and never again gonna lick anyones ass. I am no longer a friend. I'm not worried to loose the few I have left. I have left almost all of those I had. I'm more easily annoyed of traits amongst my friends that I could look past before I got sick. I don't have the energy to look past those things anymore. The worst thing was to leave my girlfriend that I had and still love to this day. She kept on living our old life when I got sick. But I couldn't put up with her bordeline or whatever she has anymore. It drained me on energy I didn't have. Also she lied a lot. Like pathological lying. It has been about two years and I dream about her almost every night even though I've met a new girlfrind over a year ago. The main reason for us to be togheter, or at least for me is the fact that we're both chronicly I'll and kind or understand each other. She is undiagnosed but probably surrefs from fibro. She wants kids and it feels like I am stealing her time because I don't want to have kids with her. She's a good person, probably way better than me, or at least the one I have become. It's really hard to try to be in love with someone that doesnt really match your personality though. I'm more of an intellecutal and she's the opposit. She is smart in certain areas though. Like cooking good food without even thinking, building things without even looking at the manual and stuff like that. More of the carpenter type I guess. We're not the best match in the world but beggars can't be choosers right?! "I'm a 34 year old chronicly I'll ex musician wannabe with bad tinnitus living with my parents now again. My main interest are playing quake and watch porn when I have the energy to do so. My main talent is to chritizise things in general. Wanna go on a date?! I hope you're okey with the fact that I only occasionally brush my teeth and take showers". One of the worst thing with being sick is the fact that all the things happened like two and a half years ago, feels like yesterday since I havent done any memorable things after that. It feels like I just recently broke up with my ex girlfriend and she has already had two boyfriends after me. That's my experience of ME/CFS. I hope it helps or inspires anyone out there. It's time to stop pretending and flip the old finger to the world. Oh yeah... I'm bitter. Who in their right mind wouldn't be? :)
We're the same age, and I completely relate to a lot of what you're saying. I hate to see you say 'worse' person though, because being unhappy or resentful about these unfair things that have happened to you doesn't make you a 'worse' person, neither does not being able to wash regaularly or be the 'perfect' partner to someone. I'm so sorry to hear that you had to leave your ex girlfriend but it sounds like you were doing it for reasons that made a lot of sense, not that it makes it any easier for you to deal with. I hope you still realise that whatever your health and it's impacts on what you can do, you still have a lot to offer to people and the world. It really does help having people in your life that understand ongoing health issues so I'm pleased to hear you have that comfort. I think it's good to aknowledhe that things are pretty crap/tough a lot of the time, but I hope you can find a way to make things feel a little bit better. I don't know how I can help, but do let me know if you can think of anything x
I love to hear you "natter on"! I'm awake in the middle of the night again, so your video popped up at just the right time. Thanks for hanging out with me!
Unexpectedly?!? Younger male here, still in high school and really appreciated and absorbed so much from this video. I feel I’am better equipped for early adulthood . seriously thnx
Hello! Thanks so much for watching and leaving a comment. Life is up and down but always interesting, and always offering ways to learn and grow even if you don’t see it at the time. However you say it , it always sounds very cheesy but it’s true.
I'm struggling at the moment as my current goal is to finally move in with my boyfriend after being together fir over 5 years but to do so I need to find a job in his area. I've have 3 job interviews and all went nowhere. Having our hopes dashed has taken it's toll on me especially as I am in the most stressful time of my life writing up my PhD thesis (which in itself isn't going that great). We've decided I'll hold off job hunting for now so he can save more money to go towards our future house deposit and I can focus on my thesis but I feel so terrible about myself at the moment. Our goal seems unachievable even though we've been working so hard towards it. I'm hoping I can get out of this phase soon but it's tough when you're constantly being knocked down.
It’s hard when you feel like you’re trying incredibly hard and being stretched and pull in so many directions. It sounds like you’re putting yourself under a lot of pressure at once. So sounds like a good idea to put on thing on hold so you don’t burn out or get completely overwhelmed by it all. It’s a tough time for adults right now so I think we just gotta make sure we don’t feel guilty, shameful or failing to not be able to get all the things we thought we would have by a certain point. It’s not our fault whatsoever. And on the job thing from talking to friends on job hunts this is totally normal. Please don’t be disheartened it’s not a reflection of you. Sometimes it’s simply about who gels best with the interviewer on the day, who knows someone else’s might have had a link to someone that works there already for example. Keep going. It will happen: sending lots of positive energy your way.
@@SophieEggleton Thanks Sophie 😊 I'm trying to remain positive but I'm getting really sick of this workload and wish I could live the life I want to be living right now. It'll be worth it in the end I guess. I just need to be patient! X
Not yet. My mum has been quite unwell with a heart condition as long as I can remember and she still struggles to get treatment/correct diagnosis so I imagine it’s gonna be a long road for me too. X
I go through phases of either being ok with life and how I'm not up to speed with others my age and I'm perfectly content in my own world at my own pace then other times things will happen- like a social event, where I'll be reminded how distant I am from others and I feel like crying and feel terrible because I just can't relate to what they're talking about. Funnily enough for the most part I'm not actually bothered about doing what they've done it's just I feel so stupid and embarrassed because it's the norm and I'm always the odd one out, most people giving you an awkward blank look doesn't help either :/
I remember when I was at uni a friend said how they had already moved out when they went to another uni previously and I felt sick?! Like this wave of shame and sadness hit me how they'd done something adult that I hadn't (I commuted to uni) and I suddenly felt like I didn't deserve to be their friend anymore because I wasn't on their level. I finished uni 6 years ago but I still get that feeling with people when they reveal something adult they've achieved. I wish I could just accept it like it's not a big deal, rather than always feel so dumb and inferior :/
Oh god I know that feeling you're talking about so well so well. Think it has been one of the most constant feelings through my twenties/thirties. I would find myself trying to steer conversations away from topics so I didn't have to hear about it or be the position where i felt funerable to that shame you spoke about. Its the same thing I used to do before I had any experience with boys and all my friends were talking about the things they'd done with people and I felt so anxious and left out. i guess it's why I have isolated myself a bit more, and don't socialise as much. Instead choosing more small or one on one social things with people who know and understand my situation. I don't know whether it's a good thing but it means i have to deal with that feeling a bit less. My situation is going to improve a lot soon, but I will always have that feeling of playing catch up and like I've missed out, but trying to focus on the short term and making the best of the situation each day i guess. I just think we all have to remember that we all have different challenges, spanners in the works, curveballs, situations that make it impossible for us to have a journey that goes at the same speed or to the same situation. We just have hope that it works out in the end, even if it's not to the place or in the way we originally wanted. x
@@SophieEggleton yeah I avoid situations where people can say those things as much as possible, and resort to muting people so they don't "trigger" me. I guess in some ways it's not healthy to block things out and ignore reality but at the same time I think protecting my mental health is more important! I'm glad things are improving for you :)
I always find your raw chatty videos very relatable. I’m so grateful you can open up and share with us all x
Well I’m glad I have online friends that have shared with me in response too. We are in this together ❤️
I will always ask what do people mean by 'strong' in that way the people use this word for emotional strength. I always call bullshit on it because I think it's a false definition of ' strength' I think those of us who crumple feel the pain, express the pain then get up and move on are the real deal of ' strong' but we are often labelled as negative ' it's about your attitude, be positive' but if you don't deal with your feelings and ignore them they can come back and bite you in the arse later when you don't expect it xx
I completely agree. I hope that came across in the video. I don't like to message that crying or being sad or upset, and feeling the emotions and working through them isn't strong. I think the opposite is true. Plus some people naturally find it easier, why is society more likely to applaud those people than ones that have to fight really hard to cope and get through something x
I have only become a worse person since I got sick I think. I'm "only" 34 but right now it feels like I'm just waiting to die. Life didn't go the way it should have, so it's kind of over except the waiting game. The only good thing I can think of is the fact that nobody in this entire world will be able to exploit me. I'm the unexploitable. That's my new super power. I will never again going to work for someone elses interest and never again gonna lick anyones ass.
I am no longer a friend. I'm not worried to loose the few I have left. I have left almost all of those I had. I'm more easily annoyed of traits amongst my friends that I could look past before I got sick. I don't have the energy to look past those things anymore.
The worst thing was to leave my girlfriend that I had and still love to this day. She kept on living our old life when I got sick. But I couldn't put up with her bordeline or whatever she has anymore. It drained me on energy I didn't have. Also she lied a lot. Like pathological lying. It has been about two years and I dream about her almost every night even though I've met a new girlfrind over a year ago. The main reason for us to be togheter, or at least for me is the fact that we're both chronicly I'll and kind or understand each other. She is undiagnosed but probably surrefs from fibro. She wants kids and it feels like I am stealing her time because I don't want to have kids with her. She's a good person, probably way better than me, or at least the one I have become. It's really hard to try to be in love with someone that doesnt really match your personality though.
I'm more of an intellecutal and she's the opposit. She is smart in certain areas though. Like cooking good food without even thinking, building things without even looking at the manual and stuff like that. More of the carpenter type I guess. We're not the best match in the world but beggars can't be choosers right?!
"I'm a 34 year old chronicly I'll ex musician wannabe with bad tinnitus living with my parents now again. My main interest are playing quake and watch porn when I have the energy to do so. My main talent is to chritizise things in general. Wanna go on a date?! I hope you're okey with the fact that I only occasionally brush my teeth and take showers".
One of the worst thing with being sick is the fact that all the things happened like two and a half years ago, feels like yesterday since I havent done any memorable things after that. It feels like I just recently broke up with my ex girlfriend and she has already had two boyfriends after me.
That's my experience of ME/CFS. I hope it helps or inspires anyone out there. It's time to stop pretending and flip the old finger to the world. Oh yeah... I'm bitter. Who in their right mind wouldn't be? :)
We're the same age, and I completely relate to a lot of what you're saying. I hate to see you say 'worse' person though, because being unhappy or resentful about these unfair things that have happened to you doesn't make you a 'worse' person, neither does not being able to wash regaularly or be the 'perfect' partner to someone. I'm so sorry to hear that you had to leave your ex girlfriend but it sounds like you were doing it for reasons that made a lot of sense, not that it makes it any easier for you to deal with. I hope you still realise that whatever your health and it's impacts on what you can do, you still have a lot to offer to people and the world. It really does help having people in your life that understand ongoing health issues so I'm pleased to hear you have that comfort. I think it's good to aknowledhe that things are pretty crap/tough a lot of the time, but I hope you can find a way to make things feel a little bit better. I don't know how I can help, but do let me know if you can think of anything x
I love to hear you "natter on"! I'm awake in the middle of the night again, so your video popped up at just the right time. Thanks for hanging out with me!
Oh that's good. I never know if people are like...WILL YOU JUST SHUT UP hahha. But thanks for joining me and hopefully 'hang' again soon xx
Loved this video. Found it when I really needed to hear it. Thank you xx
So pleased it helped in some way. Really hope you’re okay! Xx
I feel this way right now. Trying to better my life and keep positive but it feels like life hasn’t let me stand up steady for a while.
Unexpectedly?!? Younger male here, still in high school and really appreciated and absorbed so much from this video.
I feel I’am better equipped for early adulthood .
seriously thnx
Hello! Thanks so much for watching and leaving a comment. Life is up and down but always interesting, and always offering ways to learn and grow even if you don’t see it at the time. However you say it , it always sounds very cheesy but it’s true.
Sophie Eggleton I don’t feel like it sounds cheesy is that odd?
I'm struggling at the moment as my current goal is to finally move in with my boyfriend after being together fir over 5 years but to do so I need to find a job in his area. I've have 3 job interviews and all went nowhere. Having our hopes dashed has taken it's toll on me especially as I am in the most stressful time of my life writing up my PhD thesis (which in itself isn't going that great). We've decided I'll hold off job hunting for now so he can save more money to go towards our future house deposit and I can focus on my thesis but I feel so terrible about myself at the moment. Our goal seems unachievable even though we've been working so hard towards it. I'm hoping I can get out of this phase soon but it's tough when you're constantly being knocked down.
It’s hard when you feel like you’re trying incredibly hard and being stretched and pull in so many directions. It sounds like you’re putting yourself under a lot of pressure at once. So sounds like a good idea to put on thing on hold so you don’t burn out or get completely overwhelmed by it all. It’s a tough time for adults right now so I think we just gotta make sure we don’t feel guilty, shameful or failing to not be able to get all the things we thought we would have by a certain point. It’s not our fault whatsoever. And on the job thing from talking to friends on job hunts this is totally normal. Please don’t be disheartened it’s not a reflection of you. Sometimes it’s simply about who gels best with the interviewer on the day, who knows someone else’s might have had a link to someone that works there already for example. Keep going. It will happen: sending lots of positive energy your way.
@@SophieEggleton Thanks Sophie 😊 I'm trying to remain positive but I'm getting really sick of this workload and wish I could live the life I want to be living right now. It'll be worth it in the end I guess. I just need to be patient! X
Jw if you've had vascular EDS ruled out w/ genetic testing?
Not yet. My mum has been quite unwell with a heart condition as long as I can remember and she still struggles to get treatment/correct diagnosis so I imagine it’s gonna be a long road for me too. X