LOVE this!!! It brought me to tears because I know in my heart that this is so true, and I am my own worst enemy. It’s incredibly challenging to balance advocacy with professional expectations, and the lack of awareness about dynamic disabilities only makes it harder. Sensitivity training should be a standard for all workplaces to ensure that people, especially those with disabilities, feel seen, valued, and supported.
Following on from this idea. Our backpacks are smaller and the weight we can tolerate so much lighter so adding ANYTHING is a risk. Still learning that 5 years on, especially when it comes to others emotional "baggage" and desire to help 😬
Do we live a values-based life or goal-based life? When tragedy or disappointment strikes a person who focuses on living out their values vs goals will find greater resilience and life satisfaction! This is because your values can remain more or less the same even if your circumstances change and may make a specific goal impossible. 👌 🙏🏻 ❤ Values examples: Friendship, Honesty, Self-growth. Goals examples: getting a degree, a promotion or a car.
I absolutely loved this video, thanks for sharing more of your blog in this format and thinking of accessibility as always. Fabulous metaphor, fabulous post!
Thank you for making this video. I can read as long as it’s on my phone, but certain things are harder to read than others, especially if I’m trying to learn or retain information, this video was great because I wouldn’t have heard your post otherwise. I love the metaphor. I actually struggle with the opposite. I struggle with feeling like I’m not enough when my health improves. I identify myself in my illnesses and being ill especially with my ME/CFS, that I’m scared to get better and almost don’t feel like myself when I’m doing better-mind you my “doing better” is still being in bed/couch 23 hours a day. I struggle with comparing myself to others who are ill but even more struggle comparing myself to myself. My PEM isn’t as bad and I don’t really crash even after going out since I started taking medication for my POTS and other things. That scares me. I think there’s a fear to get better because I watched my old self/life crumble before my eyes and in a way die, I had to completely change everything and I’m scared to do that the other way around. I don’t have any aspirations when it comes to a career, relationships, or hobbies, I’m afraid to not have my ME/CFS rule my life because it has brutally been my oppressor for three years, freedom is incomprehensible and I have no idea what it’s like to be an adult or even an older teenager since I got sick at 16. The up and down of quality of life is worse than being stuck in a worse state, because in that state at least there is security because I’ve been there before. I don’t want to have to muster up the courage and strength to deal with such a drastic change all over again because it’s like starting over just like I did 3 years ago. I’ve built a somewhat secure routine and life which I worked hard for and had to fight to cope with. It’s almost like the better I get physically the harder it can be mentally. I’m terrified of getting worse, but just as scared to get better. ❤️🩹 😢 I feel so lost, like I’m traveling on a dark foggy river and I don’t know where I’m going to end up next, whether I’m going to go up or down, or whether the water is going to be calm or rough. Sorry for the long comment, the subject has weighed heavily on me for months I don’t know what to do about it, writing about it lifts the weight a little.
Thank you for sharing this Ruby 💜 Although our situations are different, there are definitely parts of this that resonate with me too. It takes so much to learn to adapt to a life-altering illness so it makes complete sense that the uncertainty that comes with improvement would leave you feeling disorientated. When I've experienced improvement it sometimes feels as though I'm waiting for the other shoe to drop, if that makes sense? You have my empathy - please continue being gentle with yourself no matter what lays ahead xx
LOVE this!!! It brought me to tears because I know in my heart that this is so true, and I am my own worst enemy. It’s incredibly challenging to balance advocacy with professional expectations, and the lack of awareness about dynamic disabilities only makes it harder. Sensitivity training should be a standard for all workplaces to ensure that people, especially those with disabilities, feel seen, valued, and supported.
Following on from this idea. Our backpacks are smaller and the weight we can tolerate so much lighter so adding ANYTHING is a risk.
Still learning that 5 years on, especially when it comes to others emotional "baggage" and desire to help 😬
Do we live a values-based life or goal-based life? When tragedy or disappointment strikes a person who focuses on living out their values vs goals will find greater resilience and life satisfaction! This is because your values can remain more or less the same even if your circumstances change and may make a specific goal impossible. 👌 🙏🏻 ❤ Values examples: Friendship, Honesty, Self-growth. Goals examples: getting a degree, a promotion or a car.
That's a really good way of looking at it, thank you for sharing!
@@LifeOfPippa thanks! I am only learning this since getting ME/CFS and doing Chronic Illness Counselling 😉
That's what I have discovered also
I absolutely loved this video, thanks for sharing more of your blog in this format and thinking of accessibility as always. Fabulous metaphor, fabulous post!
Thank you for making this video.
I can read as long as it’s on my phone, but certain things are harder to read than others, especially if I’m trying to learn or retain information, this video was great because I wouldn’t have heard your post otherwise.
I love the metaphor.
I actually struggle with the opposite. I struggle with feeling like I’m not enough when my health improves. I identify myself in my illnesses and being ill especially with my ME/CFS, that I’m scared to get better and almost don’t feel like myself when I’m doing better-mind you my “doing better” is still being in bed/couch 23 hours a day. I struggle with comparing myself to others who are ill but even more struggle comparing myself to myself. My PEM isn’t as bad and I don’t really crash even after going out since I started taking medication for my POTS and other things. That scares me. I think there’s a fear to get better because I watched my old self/life crumble before my eyes and in a way die, I had to completely change everything and I’m scared to do that the other way around. I don’t have any aspirations when it comes to a career, relationships, or hobbies, I’m afraid to not have my ME/CFS rule my life because it has brutally been my oppressor for three years, freedom is incomprehensible and I have no idea what it’s like to be an adult or even an older teenager since I got sick at 16. The up and down of quality of life is worse than being stuck in a worse state, because in that state at least there is security because I’ve been there before. I don’t want to have to muster up the courage and strength to deal with such a drastic change all over again because it’s like starting over just like I did 3 years ago. I’ve built a somewhat secure routine and life which I worked hard for and had to fight to cope with. It’s almost like the better I get physically the harder it can be mentally. I’m terrified of getting worse, but just as scared to get better. ❤️🩹 😢 I feel so lost, like I’m traveling on a dark foggy river and I don’t know where I’m going to end up next, whether I’m going to go up or down, or whether the water is going to be calm or rough.
Sorry for the long comment, the subject has weighed heavily on me for months I don’t know what to do about it, writing about it lifts the weight a little.
Thank you for sharing this Ruby 💜 Although our situations are different, there are definitely parts of this that resonate with me too. It takes so much to learn to adapt to a life-altering illness so it makes complete sense that the uncertainty that comes with improvement would leave you feeling disorientated. When I've experienced improvement it sometimes feels as though I'm waiting for the other shoe to drop, if that makes sense? You have my empathy - please continue being gentle with yourself no matter what lays ahead xx
@@LifeOfPippa Thank you for your kind words, it means a lot.❣️
Thanks so much this format is so helpful to listen to and such good content!
👌👌👌
Well stated